||Roman was diagnosed with neuroblastoma on April 25, 2007. A month or two after his diagnosis, Jody began sending email updates to close family and friends. This is a log of her messages to date.
|January 26, 2009
Hello to our family, friends and new friends!
Thanks to our nurse coordinator Polly (we love you Polly), Roman's scan dates are as follows:
Tuesday-Feb. 10, CAT Scan of head, chest, pelvis and abdomin very early at 8:00.
At 2:30 in the afternoon, Roman will have his MIBG Injection.
Wednesday-Feb.11, MIBG Scan at 9:00 (will have labs drawn while put under)
Thursday-Feb. 12, 3rd day of MIBG Scan- if needed at 8:30
Clinic Visit with Dr. Wagner to discuss results at 12 noon.
We are so relieved that Polly changed things for us...the old schedule had us waiting a whole week on the 19th for his Cat Scan. This schedule is MUCH better. We like to get it done and over with all at once. It makes life easier for Derney's schedule and Mike's work schedule. We have to try to coordinate 3 different schedules for Roman and Sheridan every 3 months for scans.
With scans quickly approaching us, as all of you know, Mike and I are consumed with worry and the stress that comes with these 3 month scans. If you recall, Roman's last Cat Scan showed a small "spot" at the top of his liver. Not even big enough to biopsy if we wanted to. All the docs were in agreement that this was NOT neuroblastoma...but as all of our fellow cancer parents out there know all too well...ANY SPOT FOUND ANYWHERE ALARMS US. No words by ANY doc could diminish what we feel or magically make it disappear or go away. I wish it were that simple. The fear is unbearable. Sometimes to the point of taking our breath away with just the mere thought of a relapse. I beg God, during my talks with him, to keep Roman safe.
So, I am asking right now for all of you to please talk to God about Roman. Tell him we need Roman to remain NED so that I can concentrate on RALLY 'ROUND THE GOLD RIBBON. With Debra's time being with sweet Corey, I need to have the freedom to keep our mission strong and on going.
Tell God that Sheridan needs her baby brother to remain NED so that they can continue to play together like they do every single day. Tell God that Sheridan needs her baby brother in her life for always. They need each other. Tell God that Roman is a strong little guy and that he is indeed meant to do HUGE things in his life. He is meant to make a difference. Just tell God to keep Roman safe. Tell God to keep NB far away from Roman.
I thank all of you in advance for your support and your on going prayers for Roman and our family. Without all of you behind us, we could not be "surviving" as we have since April 25 2007.
God, please keep blessing our Roman as you have. Be careful out there the next 48 hrs here in our area. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|January 25, 2009
Hello to our family, friends and new friends!
Just a qiuck update because I promised pics...it's been a while since we did pics. Just the kids being silly making faces for the camera, and them playing outside just the other day when it was really nice out. And of course a pic of our Sweet Corey cp:coreynickell when he was here for our ribbon making session. And a few other pics. Enjoy them all!
Oh, and please keep a dear friend of mine and her husband in your prayers...they have both lost their jobs very recently(you know who you are:) . And for that matter, prayers for anyone who is going thru some rough times like they are.
I will post soon with EXACT DATES for Roman's scans, hopefully tomorrow. UGGGGGHHHHH!!! God, please keep blessing our Roman as you have. Love to all of you and be careful out there the next few days with the weather that's coming our way here. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|January 18, 2009
Hello to our family, friends and new friends!
Today, was a day that I will hold in my heart always...Debra and Corey cp:coreynickell were here today, along with family and friends to help make gold ribbons for our RALLY 'ROUND THE GOLD RIBBON. The last week we have been hit hard on the website all of sudden and we needed to get 870 ribbons ready for the mail to go out on Tuesday. With everyone's help today, we managed to correct and tag 1,084 ribbons and another 870 ribbons for our orders that need to go out for a total of 1,954 GOLD RIBBONS!!!!!!!! WOW...that is almost 2000 ribbons that we corrected and tagged today. Congratulations to the following amazing people who came today to make this possible: Of course Debra, Melissa, Miss Tina (Roman's speech therapist) and her family, Derney, Aunt Jenn, Erin, Iva, Debbie, Audra, and Kathleen....without all of your help, Debra and I could not get the message out there for CHILDHOOD CANCER. And, to my husband Mike for being such a wonderful husband helper and putting up with all of us women:)
We got alot done today. We have not had a Gold Ribbon Making Day since before Thanksgiving so, we needed to do this today. I will throw it out there to ANYONE who lives near us in the tri-state area, contact me and we surely could use your help and your hands:) As our mission will be on going ALWAYS. And, with spring and summer coming, we will be getting much busier.
I cannot tell you how good it felt to see and hear sweet Corey laughing over here and having fun in our home. We love you Corey! And, Melissa Melville...it was soooooo good seeing you and we love you and thank you for surprising Debra today:)
I have noticed that I have not done an update in a while. Time just keeps on passing by. I am so not looking forward to scans next month. I am just waiting to hear from Polly next week to make sure of the exact dates. Roman will have his MIBG injection on Feb.10, and MIBG scan the next day on the 11th. Not sure yet when the CAT scan will be. I know people always pray for Roman...but if you want to right now, I am quite sure God will listen and ask you for who and what you want to pray for. Tell God that we need Roman to remain NED as he has been.
I guess that is it for now. We are just enjoying daily life here at the Fariello household. Until next time:) God, please keep blessing our Roman as you have. God, thank you for putting such amazing people right in front of me to help with our Gold Ribbon campaign. Love to all of you! Jody, Mike, Sheridan and RomanFariello.......and...........www.RALLYROUNDTHEGOLDRIBBON.or
|January 13, 2009
Hello to our family, friends and new friends!
Today, Derney and I took Roman to the allergist for a follow up from his blood test. He said Roman's level for his peanut allergy has definitely dropped alot since his last blood test at the age of 13 months. However......he did a skin test today on Roman's back. And boy, Roman did NOT like that at all!!! He cried the hardest tears for about 35 seconds and then it was over. The skin test proved that Roman is still allergic to peanuts. The doc said though that since his level was so low and has come down, that maybe Roman is falling into the 15 to 20% of kids who DO out grow it. We can only hope and pray that is the case. The doc said that we will do a food challenge when he is 5 years old AND only if his blood level remains as low as it is. So, at least we know that something has changed in his body to make his level go very low for peanuts. Now we just gotta pray that it goes completely away from him in the next year and half or so. THAT would be a wonderful blessing and a relief. So, for now anyway, we are status quo. Which is fine with us because we have been peanut free since Roman was 13 months old. We are used to it.
Nothing else really going on right now with Roman. I am hoping to get dates soon for his scans next month. Please continue to pray for our sweet Corey cp:coreynickell. He has a GFR (kidney function test) tomorrow and an MIBG scan on Thursday. So, alot of prayers for Corey, Debra and Jim and their families.
Love to all of you and thank you for your continued prayers and support for Roman and our family. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|January 7, 2009
Hello to our family, friends and new friends!
I am not feeling too well today...and no, it's nothing physical. My heart is aching and breaking. As if little Dante going to heaven was not enough. In less than 24 hrs. 2 beautiful boys lost their battle with Cancer. Little Coleman Larson went to heaven on the night of the 5th. He did not suffer from Neuroblastoma like Dante, he had Medullablastoma. Both evil childhood cancers. Coleman was a twin. His brother's name was Caden. They just celebrated their 5th birthday together recently. I have been following Coleman for quite some time.
Last night, while I was on the phone with Debra Nickell, we both found out at the same time about Coleman. We cried... as if we didn't already have enough to cry about together. We both immediately thought about his twin Caden. The more I thought about Caden, the more angry I got. He is supposed to have a twin brother for life. He is supposed to grow up with him, go to school with him, play sports with him, go to prom with him, graduate from high school with him, maybe go to college together and so on.
What is it going to take to wake people up out there??? Our kids are dying people! I wish I had Oprah's, Bill Gate's and Donald Trump's money,so then I could form "dream teams" of researchers and scientists for EACH and every single childhood cancer. NOT childhood cancer as a whole. We are NEVER going to get anywhere with all of these horrific cancers rolled up into one title of CHILDHOOD CANCER!!! My God I am so angry. I am angry that Roman has to go thru scans every 3 months. I am angry that my sweet Corey has to endure God knows what down the road with treatment options that have horrible side effects, and that's only from the ones we DO know about. I am angry that Roman does not get to play with his buddy Corey. I am angry that I have to live a life of fear of relapse and always looking over my shoulder. I am angry that I have to have not so pleasant talks with both Roman and Sheridan in the future. I am angry that we spend way too much money on stupid things in this country like saving whales or manicures, pedicures and doggy spas for dogs and cats!!! All the while, within the last 24 hrs. 2 families have endured hell watching their precious little ones go to heaven. C'mon people, what is it going to take! I am angry that the media in this country gives way too much attention to dumb criminals, stupid congressmen who cheat, lavish life styles of celeberties and animals. YES, I said animals! ANIMALS get better research and attention and are taken care of better than our own children of this country. Our government is giving bail outs left and right to everyone...WHAT ABOUT A BAIL OUT FOR OUR CHILDREN!!!!!! Where in the heck is that money???
46 kids each school day gets diagnosed with a childhood cancer. I pray to God that you will never be one of the 46 like we were on WEDNESDAY, April 25 2007. I am so angry right now. Angry that 2 more beautiful boys died. They are gone. Gone from their families. Gone from their mommy and their daddy. And their twin. Gone from grandpas and grandmas. Add these boys to an ever growing list of kids that died and are in heaven right now. I long for the day that we don't ever have to do updates like the one I am doing right now.
OK...Thanks for letting me let it out. I still have way more...but will end there for now. To the families of little Dante and Coleman, your boys will never be forgotten. I vented for them. They were both fighters all the way up to the end. I will leave you with the most beautiful pic. It is my favorite of Coleman with his mommy Peggy. This is the kind of pic that does not need titles or captions. It says it all.
God, please give abundant strength to Dante's and Coleman's families. God, please give guidance for the Nickell family. God, please keep blessing our Roman as you have. With anger! Jody, Mike, Sheridan and Roman Fariello:(
|January 6, 2009
Hello to our family, friends and new friends!
Well, I got a call today from the pediatrician's office...the peanut allergy results are in.....Roman is a
0.5..........YES, WHAT DOES THAT MEAN FOR ROMAN???? We have absolutely no idea. What I can tell you is that we do have an appt. with the allergist next week on the 13th. The same one Sheridan goes to. The test that was done has a scale of 0 to 17 and beyond. So, you can clearly see that Roman's result is very low...however, that does not mean did-lee-do to Mike and I. We are going to see what the allergist wants to do with Roman. The test that Roman had previously, was a RAST test and he was a 2 point something at 13 months of age. So, I really have no news for you just yet. Only a number that means really nothing to us right now.
To our fellow peanut allergy parents out there, if you have had a similar test for your children, please let me know what your results were. We are just curious and want to know everything we can know about Roman's results and what they mean. Since he is so low, what does this mean as far as breathing in peanut whatever, or touching peanut whatever or cross contamination, and can we take him to the circus or a Reds game...so many questions we have. Will he out grow it or will it get worse with a controlled food challenge of some kind. The poor allergist is not going to know what has hit him when I get done with him:) I will let all of you know what happens with this. Hopefully with some more answers next week with our visit to the allergist.
I wanted to thank everyone for their comments and emails regarding my update yesterday with Sheridan's comment to Roman the other day. It was nice hearing that things like what happened here, has happened with other cancer families too. We all do agree that there is no book for us cancer parents to just pull out when we need it to help guide us in general for different things that come up. It also makes us feel good to know that we have such a wonderful extended "family" in all of you. It assures us that every step of the way, we are never alone. For that, we thank all of you tremendously.
Please, still pray for our sweet Corey cp:coreynickell. Debra and Jim met with the doc yesterday to discuss possible treatment options for Corey. Pray for strength and guidance for the Nickell family.
Also, I learned this morning that Neuroblastoma took another life. Little Dante cp:TrooperDante, earned his angel wings this morning. Please, say a prayer for peace for his family and strength to go on everyday without their little guy. Dante was an adorable little guy around Roman's age. Please, pray for his family now.
I guess that is it for now. I will for sure update about our visit next week with the allergist. God, please keep blessing our Roman as you have. God, thank you for sending us such an amazing support team of family, friends and new friends every day of our journey. God bless all of you and Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|January 5, 2009
Hello to our family, friends and new friends!
Today is a very special day for us...8 years ago today, Mike and I were married:) Happy Anniversary Mike! I cannot believe that it has been 8 years for us. Mike would say it feels like an eternity for him (he's such a smarty pants). We can pretty much say that with each year that passes, and with Roman's cancer, that we could not be any closer. I am very blessed to have such an amazing husband and father for Roman and Sheridan. He is so great with them. And, Mike and I are great with each other. I love you honey!!!
Ok...enough sappy stuff...
I also called to see if Roman's blood test results were back yet and they of course are not. The nurse told me 7 to 10 days. Sounds way too long for me just for a peanut test. Any way, when I get them, I will let everyone know.
I wanted to share a little drama that happened here with some powerful words from Sheridan to Roman a couple of days ago.
Boy, did I get a real dose of “
” on Friday…almost too normal if you ask me. Sheridan and Roman were playing together with their new toys. They have been playing really well together since
’s Christmas break from school started. Friday, I was getting together a ribbon order and I overheard
ask Roman “why do you always follow me” and Roman said “c’mon Sher let’s go up and play” like he ignored her comment. She asked him again the same question. Harmless right??? Then, I chimed in and told
to be nice and that her baby brother loved her and wanted to play with her. She then said back to me “but if I didn’t have a baby brother then I could play by myself.”
I cannot begin to tell you what hearing those words did to me instantly. Those words struck the biggest nerve ever inside of me. I immediately responded firmly “do not ever let me hear you talk like that again”. “If your baby brother was not here with you, you would miss him terribly.” Now, coming from a “
” family, I am sure those words or similar words are heard all the time without ever thinking “what if”. But in our household, living a life of fear of relapse and cancer and knowing that Roman could God forbid be taken away from us just like that, those words did not sit well with me at all and I let her know it.
Again, there is no book out there for us Cancer parents, to help guide us into making the right decisions on what to say or what not to say and how to say it…even when it’s the sibling of the child with cancer that we are dealing with and not the cancer child. It’s so hard and I am quite sure as both Roman and Sheridan get older there will be plenty of times like the time I had today. I am sure there will be many times where I will not know what to say or how to say it. I got lucky today with my choice of words. I do not ever want to make our children’s lives any more difficult then they already are or will be from Roman's cancer. And I surely don’t expect
to fully understand her words at the ripe age of 5, but I did not know what to say to her to let her know that her words and her thinking like that were both unacceptable.
Mike had then told me that he witnessed another episode of
saying something similar one night while in the bathtub. Again, he let her know that talking like that was not acceptable. Has anyone of our fellow cancer families had situations like this? I am sure there are and we are not the only cancer family that has gone thru things like this. It caught me off gaurd hearing Sheridan talk like that about Roman. A simple exchange between a sister and brother, but not so simple in our household.
It was just another harsh dose of reality in our faces with
’s “normal” comment. Her comment, as innocent as she said it, is anything but “
” to us. At some point and time, I have no idea when and at what age, we will tell Sheridan just how serious things were and are for Roman. Right now, it's one day at a time here. And her comment just hit me like a ton of bricks.
Anyway, moving on...we still need prayers for our sweet Corey cp:coreynickell. Debra and Jim have alot of tough decisions to make regarding treatment options for Corey. Just please pray whatever they choose, works for Corey.
I guess that's it for now. I will update soon hopefully about his blood test result. God please keep blessing our Roman as you have. And God, thank you for giving Mike and I the gift of 8 wonderful years together and the strength to be the team that we are together. Time sure does fly by. God Bless all of you and love to you! Jody, Mike, Sheridan and Roman Fariello:)
|December 31, 2008
Hello to our family, friends and new friends!
Well, here we are...the final hours of 2008. I must say that 2008 was a bitter sweet year for us. Roman is and has remained NED. Our sweet Corey has not. So many other kids have not. For those parents, I am quite sure they are ready for a new year and a new chance to kick cancer's butt once and for all. For parents like Mike and I, we are forever living in that "what if" daily life routine. Wondering when and if, God forbid, we will be blindsided by a relapse.
I wanted to let everyone know that Mike took Roman today for his blood draw to see if he is still allergic to peanuts or not since his transplant last year. I am sure it will be few days before we get the results. As soon as I get them, I will let you know of course. If the test does come back negative and he is not allergic anymore to peanuts, I am not sure what that exactly means for Roman. I do know that we will definitely be in contact with Sheridan's allergist to talk to him about it. I am not just going to give Roman some peanut butter and let him have at it! Way too scary. It really would be a miracle though if he is not allergic anymore with everything he has been thru....it would be one of the few good things that his cancer has brought us.
I guess that is all I really wanted to let everyone know. We will be saying good bye to 2008 and welcoming 2009 with open arms, open hearts and alot of hope and faith. Hope and faith that Roman remains NED and that NB stays away from him forever. Hope and faith that our sweet Corey cp:coreynickell can achieve NED status again so he can be all what a 4 year old little boy should be:)
To all of our family, friends, new friends, Roman supporters, fellow cancer parents and families on carepages and caring bridge...HAVE A SAFE, HEALTHY, BLESSED NEW YEAR !!! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|December 27, 2008
Hello to our family, friends and new friends! WOW! Boy did Santa make a special delivery here at the Fariello Household!!!!!!!!!!!!!! We sure hope everyone had a wonderful Christmas just like we did! I had soooooooo many pics I had to seperate them into 3 different sets! The first set of pics is of Roman and Sheridan seeing the trains with Derney, Duppy and Uncle Steve and our get together with both of my sisters and their families. The kids had sooooo much fun seeing the trains and they really enjoyed seeing their cousins and spending time with them at my sister's house. Click link to see the week before Christmas Pics...
The second set of pics are of Christmas Eve here at our house. It is tradition that Mike makes his secret Italian Sauce from scratch with pepperoni, sausage and homemade meatballs over pasta. Of course we had Italian bread and Mom's homemade cookies and treats for dessert. We ate very well:) Then we opened up presents. Uncle Steve, Aunt Jenn and Uncle Andy, Cousin Ian, Aunt Jenn's parents Barb and Denny, Derney and Duppy and the four of us. It was sooooo much fun for everyone. The kids were so excited of course. Click link to see Christmas Eve pics...
The third set of pics are of Christmas morning with Sheridan and Roman. They have no idea how much Mike and I really enjoyed playing Santa for them and making Christmas fun for them. To this day, I am 38 years old and I still remember all of those wonderful memories growing up and having Christmas presents galore! Sheridan was so excited about her Barbie Glitter Doll House, that she hugged it (we have it on video) and Roman was just plain excited this year about ALL of his presents. He had no trouble tearing into everything this year:) Mike and I literally put things together from 8:30 til 5:30...all day long on Christmas day!!! Mom and Dad came back over on Christmas day to eat Mike's sauce again for dinner with us. We had such an amazing Christmas this year. We know how fortunate we are to have such a wonderful Chrsitmas with Roman and Sheridan and with our families. Click link to see Sheridan and Roman on Christmas morning..
As I have read the past 2 days about other carepage/caringbridge families, literally going thru a painful and down right horrible time this Christmas with their sick children, I know how blessed we are. We have taken inventory of what is truly important. We have been taking that same inventory since April 25, 2007. To our fellow friends and families who are suffering right now with their sick children or who are thinking about a beautiful memory of your angel already in heaven, our thoughts and our prayers are truly with all of you at this time.
Please continue to keep praying for our sweet Corey cp:coreynickell.
We hope everyone has been enjoying their special time with family and friends... and playing with all of your kids' toys with your kids!!! God, please keep blessing our Roman as you have. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|December 23, 2008
Hello to out family, friends and new friends! I cannot believe that tomorrow is Christmas eve already. Time is going really fast and soon we will be ending 2008. I want to take this time to wish all of our family members, dear friends and Roman supporters, close by and far away...A VERY MERRY CHRISTMAS from our hearts to yours!
At Christmas time, it gives all of us the opportunity to say and do things we normally don't do. It is the Christmas spirit that takes over us. Watching both Roman and Sheridan get so excited over Santa coming and listening to them talk about Santa and the chimney etc. makes me feel so blessed to be a part of something so magical and so fun for them. As kids we really don't understand fully what Christmas really means. We want presents and snow and yummy cookies etc. As adults, we wish for much bigger things like happiness, good health, peace on earth, good times and good food with family and friends. Being together is what matters.
My personal Christmas wish is like no other, except for my fellow cancer parents out there. I wish for a cure for my son. I wish the word RELAPSE did not exist. I wish to have no fear of losing him ever to cancer. I wish for all of my fellow cancer parents to feel peace, both emotional and physical peace. I wish for abundant strength and beyond for all of my fellow cancer parents who will be spending their 1st or their 21st Christmas without their children. I wish that we did not have to make Christmas wishes like this ever again.
Please, as you celebrate with your families and friends the next couple of days, really take inventory of what matters. What truly is important in life. Look around you and take it all in. It's not about anything other than love and being together. We will be enjoying the next couple of days with the kids and family. I will post pics in a couple of days. God, please keep blessing our Roman as you have. God Bless all of you, our dear Roman supporters and have a wonderful and blessed Christmas! Jody, Mike, Sheridan and Roman Fariello
|December 19, 2008
Hello to our family, friends and new friends!
Click on link to see Roman with his pediatrician and staff:)
FINALLY.......................Yesterday Roman had his first pediactric visit with our pediatrician, Dr. Sheila Harmeling. The visit went really well and Dr. Harmeling and her staff were very excited to finally meet and see Roman! We have lived in our house for 2 years this past Tuesday...and that means that it has been 2 years since we found Dr. Harmeling and 2 years since they have been following and hearing about Roman, waiting to finally meet him after that length of time.
We discussed his peanut allergy and the possibility of it being altered because of having his transplant last October. The transplant docs told us that COULD be a possibilty with any allergy. So, she wrote me a script for a blood test for a Rast test to be done for us to find out where Roman stands with his peanut allergy. Then we discussed Roman's teeth and Dr. Harmeling gave us a referral to a pediatric dentist close by us. She looked at them and she did not feel there were any major issues, but that his front teeth are of course discolored from chemo and everything else. She said the enamel was worn off. So, after the new year, off to the dentist we go:)
We also discussed re-immunizing Roman and gave her all of the copies of things she would need for Roman to reference with scan schedules and vaccine schedules etc. So, as you can imagine, we were there for over an hour for our visit. Roman also got his second part of his flu shot in his thigh. He told me he didn't want it...and when he got it he teared up some telling us "it hurts". I could not believe that EVERYTHING this child has been thru, it all came down to a shot in the leg to get him to tear up finally and say "it hurts". He'll gladly give you his hand for a blood draw or an IV, but tears up for a shot in the leg...go figure huh! I welcomed the "tearing up" part because it felt "NORMAL" to me:)
All in all, Dr. Harmeling and the nurse and the resident all said Roman was a "miracle" and that he looked great! And, Thank you to our coordinator at Children's Hospital, Polly Melvin, who sent Dr. Harmeling everything she needed for Roman yesterday. An updated summary of Roman to date and last month's lab work etc. Thank you Polly, we love you!
It felt very WEIRD and like we were in the wrong place yesterday at Dr. Harmeling's office. An OUT OF PLACE feeling came over me. Taking Sheridan there is NORMAL...taking Roman there yesterday was everything but NORMAL to me. It feels good to be where we are, but very scary at the same time. I want to thank Dr. Harmeling and her staff for making our first visit very comfortable and for making it a no stress visit for us also:) Now, onto other news...
Our sweet Corey has a game plan as far as treatment goes for his new "spot" on his femur. He goes in tomorrow to start 5 days of chemo. The good thing is that he only has to stay the night for the first night...so...it looks like Debra and Jim will NOT have to spend Christmas in the hospital with Corey. Please continue to pray that this works for Corey without any major side effects from the chemo.
Also, many many carepage/caring bridge families are spending their very first Christmas without their children. I think of them daily. I count our blessings daily. I look at Roman and THANK GOD that he is alive and breathing everyday. I cannot even comprehend how my fellow cancer parents go on without their children. My heart aches for them and prays for them that they get daily strength from God to keep on going. So, please remember them in your prayers this Christmas. Like Mimi says "give them a kiss while they are sleeping because...THEY KNOW". cp:JuliansWorld
We have a busy weekend planned...tomorrow we are spending some time with both of my sister's and their families. And then on Sunday...Derney and Duppy are taking the kids to see the trains over here by us...to let Mike and I have some time to wrap EVERYTHING that Santa has got already for Roman and Sheridan:) When I say EVERYTHING...I mean just that...EVERYTHING!!! The kids don't want for much with gifts from Santa, then from Derney and Duppy, aunts and uncles. I cannot tell you how good it feels to be able to have FUN with the kids this Christmas...something Mike and I will NEVER take for granted. And, to be with family:) That's what it's all about...spending precious time and making unforgettable memories that will last forever:) Have a safe weekend shopping out there! God, please keep blessing our Roman as you have. Will update again next week. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|December 15, 2008
Hello to our family, friends and new friends! Please click on link to see pics of kids w/Santa
As you can tell, we have been pretty busy with Santa and shopping and everything that goes with the season. Roman and Sheridan sitting on Santa's lap at the mall. He was a fabulous Santa as you can see! The kids had a blast and did not want to get off of his lap. Sheridan even said to me "but Mommy, I didn't get to tell Santa everything I wanted" and I assured her that Santa knows exactly what she wants! We waited for about an hour to see Santa last Thursday night. After Santa, the kids wanted to ride the carousel in the food court area and of course they did:) By then, we were STARVING and went to IHOP to eat a late dinner/breakfast.
Then on Saturday, Debra Nickell and I were invited to our dear friend Jamie Landheer's house. (See pics in link also) Jamie has helped us so much with the ribbon campaign and making ribbons, ideas etc. This was no ordinary visit for us though...we were honored to meet a fellow caring bridge, NB family from Michigan who lost their precious daughter on June 13. The family of sweet Marissa Monroe. Her Mommy Tracy, Daddy Randy and older sister Makenzie came down for a visit with Jamie. Saturday was 6 months to the day since Marissa earned her wings into heaven. I know it was a very rough day for the Monroe's and for Debra, Jamie and I as well. With the news of Corey so new, and with it being the 6 month anniversary of Marissa's passing, how could it not be a rough day. Jamie knew we had to meet each other and put this together for us at her house.
It was a great time of some tears, alot of info shared, alot of ideas back and forth and alot of laughter too:) One thing is for certain...once you are a cancer parent, no matter what, you ALWAYS have "family"...and the Monroes can now add us to their "family" and we gladly add them to ours. The visit was a bundle of emotions on all parties involed. Jamie learned alot of info about NB, about Marissa and Corey and Roman too. I learned that Tracy is beyond the title of a wonderful mother, she is literally walking strength. She is missing her "Rissy" like crazy, and with it only being 6 months ago, she has not stopped. Everyday she puts one foot in front of the other and keeps on going. She was such an amazing source of info for Debra and I both. Tracy, THANK YOU for sharing your family, your beautiful memories of Marissa, your insight and of course Marissa's anniversary day with us. THAT in itself made the day what it was:) And to Jamie, we THANK YOU for hosting such an amazing meeting between NB families. It was a day that was meant to be. I will cherish it always.
We are still in full speed ahead with prayers for Corey Nickell cp:coreynickell. As of now, we do not know the results yet from the Bone Marrow Biopsies that were done on Friday. Hopefully we will know more tomorrow.
That is about it for now. Thursday, Roman will FINALLY get to meet his pediatrician, Dr. Sheila Harmeling. He goes in for the second part of his booster for the flu shot. And for her to examine him for the first time ever and for me to ask MANY questions about moving forward with Roman's care. I will update more that day after the appt. So more prayers needed for our sweet Corey and that they come up with an attack plan. God, please keep blessing our Roman as you have. Be safe with the weather out there. Love to all of you! Jody, Mike, Sheridan and Roman Fariello
|December 10, 2008
Hello to our family, friends and new friends!
Well, there is no other way to say this other than to just put it out there...our dear beloved Corey Nickell, has a new tumor/lesion on his femur. Debra called me tonight after talking to Dr. Wagner and she was just numb. I of course was tearing up and trying everything in me to stop crying for her. She was numb but with strength. I was out shopping with my friend Deb Powell. We were at Big Lots, sitting in the parking lot when Debra called me. Thanks to my friend Deb Powell for being with me tonight...a night that God knew I needed her to be with me, and she was.
Debra and Jim meet with Dr. Wagner tomorrow. The tumor that was in Corey's head is gone, by radiation. The chemo however, obviously did nothing since there is now a new tumor in his femur.
So, this combo of chemo drugs is officially done. They are planning to discuss what's next for Corey tomorrow. Debra described it best in her update tonight...
Hello again! How do I share this news? I wish I had all good news to share. I do have some good news. The tumor in Corey’s head is gone. YIPEE!! However, he does have a new lesion on his right proximal femur (near the right hip). Unfortunately this means the Chemo that he has been taking is NOT working. Our next step is unknown right now. We have an appointment with Dr. Wagner tomorrow morning. We will discuss our options then. Corey will also have to have another bone marrow biopsy as soon as possible. It is possible that with the spread to the femur, the cancer may have also spread to the marrow. I hope not but we can only wait and see. As we were told, relapse of NB is a game of Whack-a-Mole. You knock down one spot and a new spot shows up. WHY?!!!! I don’t have any more words for you all right now. Just please pray. I am numb and furious. Jim and I have decided we are going to buy a Whack-a-Mole game just for the mere purpose of destroying it. I know it won’t make things better with Corey but it sure will feel good to take our anger out on something that represents our battle. I will update again when I know more. Thank you for your continued love, support and prayers. Storm the gates of heaven for Corey’s complete healing. Thanks! Love the Nickells.
Well, we have the daggone whack-a-mole game here and beating on it somehow just does not seem like enough. I will never look at whack-a-mole the same way ever again.
Please, all of my Roman supporters...go to cp:coreynickell and leave them messages of support and hope and prayer. I am a strong believer in things happening for a reason... but I am struggling right now very very hard on why this is happening right now at all with our sweet Corey:( I am sick. Physically ill. I pray God gives ME the strength I need to be strong for Debra and Jim. I am strong, but sometimes not really. Please pray the hardest for the Nickell family. For they are in every sense of the word OUR FAMILY!!!
God, please please hear me...please keep Corey safe in your hands, only YOU can perform miracles. Miracles happen all the time...this we know. God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello:(
|December 8, 2008
Hello to our family, friends and new friends!
Time is sure getting away from me these days. Roman continues to do just fine. No complaints...except for maybe him fighting with his Sissy:)
Mike's company's X-mas party was Saturday night at Drees Pavillion over here in Covington. Gorgeous place...if anyone is looking for a hall for a wedding reception. Just beautiful! And, we of course, got our pics taken professionally with the Cincinnati skyline behind us. It was a very fun night. Good food and Mike's co-workers are the sweetest people. And funny too! Mike and I look forward to this party because it's the one time of year that we get cleaned up and put on our Sunday best!!! Enjoy the pics...Mike and I, Sheridan being silly and Roman getting ready to pull on the freezer door.
Click on link to see us...
I have just been busy shopping and getting into the holiday spirit. Something I did not really get to enjoy last year at all. This year, is different for us for sooooo many reasons. I really have not even wanted to be on the computer either...I guess it's the time of year. I still want to know what is going on with our fellow cancer families, however, it is hard to get into now because of the holidays. My mind is elsewhere.
Just because my mind is elsewhere, does not mean that I still am not concerned or worried about our dear families going thru cancer's %$#@. This Wed. is Corey Nickell's (cp:coreynickell) MIBG scan. Believe me, it's all I have thought about, and I told Debra that too. This scan is to see if the tumor in his head is still glowing, shrunk or God forbid any more glowing spots anywhere else. Debra and Jim could most definitely use some prayers this week for Corey and that they get good news. Debra and Jim, we love you guys and we are storming the gates of heaven for Corey:)
That's it for now. Please keep all of our fellow cancer families in your prayers, for it is truly a rough time on alot of parents right now who have lost their children to cancer already. God, please keep blessing our Roman as you have. Be safe shopping everyone. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
November 26, 2008
Thanksgiving is already tomorrow, I cannot believe the time. This time last year, we just brought Roman home from transplant. We have so many people and things to be thankful for. I want to let everyone know how blessed Mike and I are to have all of you in our lives. Whether you are family and friends living close by us or far away from us…or, if you are one of the wonderful families we support on carepages/caringbridge and in turn you support us. We are extremely blessed by all of you. Our lives have been forever changed because of Roman’s cancer.
I personally do not look at Thanksgiving Day the same way anymore. I look at it much deeper than the average person does. Thanksgiving to us cancer parents is so much more than the average turkey, pumpkin pie and an off day from work. It means that we appreciate many gifts, but not the kind that you are probably thinking…
The Gift of Strength…we are always pushing our strength to limits that are off the charts and unknown to the outside world. From a lack of sleep and a lack of eating, to being worried sick waiting for scan results. To the parents who somehow find the know how to roll their sleeves back up and start picking up the pieces after being told “there’s nothing more we can do, go home”. To the parents who are missing their children in heaven terribly, who manages somehow to keep on going everyday without their child. This is not regular strength that we are grateful for…but…EXTRAORDINARY strength that ONLY comes with being a cancer parent.
The Gift of Patience…now I do not do too well with this one. My husband Mike does, more so than me. From waiting for scan results or test results, to being at a clinic appt. that was suppose to be at 10:00 a.m. and you did not get seen until noon and didn’t get home until 5:00. From dealing with insurance issues to dealing with nurses and docs who don’t know who you are and you have to repeat everything from the last year and half to them, not once but twice. Yes, patience is not my strongpoint, but boy God has surely tested me in ways that I have had MORE patience than I ever thought I could have while on Roman’s cancer journey. Here’s to even MORE patience…to those of us who have other children in the house to take care of along with our cancer child. Talk about patience…we give new meaning to the word Patience as both a cancer parent and a “normal” parent.
The Gift of Laughter…cancer parents are forced to laugh at times and if we didn’t, we would cry. Mike and I are definitely grateful for our laughter…for we have survived on it now for a year and a half since Roman’s diagnosis. Even at the worst of times, laughter is by far one of the tools that a cancer parent must not live without. We thank you God for making us smile, even when we can’t or don’t want to.
The Gift of Time…this is beyond IMPORTANT to a cancer parent. Every second of every day is nothing short of a miracle when it comes to our children with cancer. Yes, they are still our children and sometimes get on our nerves, but we even appreciate the “nerves” part. Time is precious. Time is a blessing to us. Time is not rushed or wasted with us. Time is spending tiny moments of joy that we wished we could bottle up and save forever. Time is like hearing an ANC is high enough for going home from a round of chemo, or completing a transplant or a protocol. We cannot make time go slower and we cannot make time go faster. Even though we wished we could have ALL the time in the world with our children with cancer.
Oh how I wished time could be on our side when it came to Roman’s future. Time is UNIDENTIFIED and UNCERTAIN with Roman. I wished TIME could be replenished to those cancer parents who lost their children already. Time is an amazing gift to all of us…please don’t waste a second of it.
I have mentioned Strength, Patience, Laughter and Time. I am sure there are many more things we cancer parents are grateful for. But the main thing we are most grateful for is to be the parents of the most amazing, most strong, most loving, most gentle, most brave, children in the world. I have said this before last year and I will say it again this year…I would not change a single thing while on Roman’s cancer journey. I have learned so much thru my 3 year old son. I am truly honored to be his mom. When God chose me out of all the other moms out there to be Roman’s mom, he KNEW exactly what HE was doing all along. It was all in the plan. God does not make mistakes. Just like he knew with all of my fellow cancer moms and dads out there.
Mike and I want to thank Roman’s doc, Dr. Lars Wagner and our nurse coordinator Polly Melvin who take such amazing great care of Roman and us. They are both so genuine, and caring and loving people. That’s why they are good at what they do for so many families like ours. And I know there are a lot of staff members at Cincinnati Children’s Hospital who follow Roman and we want to extend a Thank You to those of you who see us at clinic, and for scans down in radiology and nuclear meds, and also in recovery. There are so many people who care for Roman, at 3 month increments for scan time.
Mike and I also want to THANK our friends, both old and new ones. We could not and would not be where we are today without your loving support. And to our RALLY ‘ROUND THE GOLD RIBBON makers…we could not be doing what we are doing and accomplishing what we are accomplishing without your help and support. There are SOOOOOOO many helpers. My heart is full because of your willingness to not just help Roman and Corey, but ALL kids battling and fighting for their lives. It’s amazing how our mission has snowballed and is taking off because of all of you!!!! Just this week, I have mailed out over 1000 ribbons!!!! To see most not all of the "angels" who make ribbons, click on the link and hit SLIDESHOW.
Since it is Thanksgiving, Mike and I want to thank our families for their continued love and support. And, to Mom and Dad (Derney and Duppy)…we are so blessed to have you and your help throughout every scan, every test and every doc visit for both kids. Just anytime we need you, you are there. We love you!
Now, that I have personally thanked who we needed to thank…enjoy the pics of the kids “helping” Mike paint our half bath and a beautiful prayer blanket Roman got from Aunt Margaret Fariello's friend. And, Roman LOVES puzzles!!! Pics of Roman and Sheridan, click link then SLIDESHOW (upper left).
Please… go and get ready to make many memories with your family this Thanksgiving Day. ENJOY your time together…for you know we will be enjoying every second we can and we have sooooo much to be thankful for! God Bless! Jody, Mike, Sheridan and Roman FarielloJ
|November 20, 2008
Hello to our family, friends and new friends!
We met with Dr. Wagner today and had a very good discussion about numerous concerns that Mike and I both had. The first concern was the "spot" on the liver. It is a very tiny spot. It is 6mm. Do we know 100% for certain that it is NOT neuroblastoma...no. Do the 3 docs, including Dr. Wagner, who looked at this on the CT scan think this is a NB spot...no. Are Jody and Mike concerned with the "spot"...yes. But, that does not mean that we are fearful. The plan of action right now, is to watch it on the next set of scans which will be in Feb. The fact that it did not glow on the MIBG scan, and that Roman is doing very well, and labs looked AWESOME, and the fact that NB does not just come back like that on the liver only, Dr. Wagner said with confidence "that would be extremely out of the ordinary for a NB relapse." So, with all of that being said, we are concerned because we know it's there, that's it. Other than that, we will not be worried about the spot at all.
We also discussed relapses and the time they most occur. Dr. Wagner said, "he wished he could give us a time frame and tell us that a relapse would not happen after a certain time, but he can't". And we know that. However, he did say, the most relapses occur in the first 2 years after being diagnosed. He told us that from here on out, there will probably NOT be a time where Mike and I will not be worried or concerned with SOMETHING going on with Roman. We will ALWAYS be concerned about every little thing going on with Roman. And, we know that too.
We talked alot about re-immunizing Roman and the shot schedule. Dr. Wagner is such a magnificent doc. We hold him with the highest respect. Mike and I have things to talk about with the shots schedule over the next 2 years. Roman is not allowed to have any "live" viruses for 2 years post transplant. But we do have some shots he can have now, which he can get from the pediatrician finally!!!! HOORAY! The pediatrician's office can't wait to meet Roman. They will soon get to meet him because he got the first part of the flu shot today in his thigh and in 4 weeks he has to go back for the second part. And, will be having it at the pediatrician's office. For those of you who don't know, Roman and Sheridan's pediatrician died last year while Roman was in transplant. We miss you Dr. Michaels so much. Dr. Harmeling is the kids new doc and she is very nice and we are happy that their entire office is excited about seeing and meeting Roman.
Roman also got a very thorough exam today and Dr. Wagner felt this lypmh node on Roman's neck and it still felt the same. So, good news there too. We did do a urinalysis, but I don't have results of that just yet. Probably tomorrow sometime I will get them.
I did get to meet Melissa Gross, Kevin's mom. Melissa is the mother of a 16 year old NB survivor. Kevin had his clinic appt today at the same time Roman did. We did not get to unfortunately meet Kevin, but we are going to for sure real soon. It was good for me to just hug a cancer mom who's been going thru (what we have gone thru) for 14 years or so. Melissa, we love you and so glad we got to meet you. You and your Kevin and your family are such a huge inspiration to Roman and our family and many others. God bless you for reaching out to us like you have. Can't wait to meet Kevin!!!
This week has been extremely hard on all of us and you all, our Roman supporters. This week would not have gone as planned had it not been for my mother in law being here for us AGAIN. All hours of the morning, taking the ferry to see us, getting Sheridan fed, ready for school and on the bus and even picking her up too. All 3 days while we were with Roman at the hospital. Mom, we cannot thank you enough for all you do and have done for us. We love you so much. I have said this before and I will say it again...Roman, Sheridan and Ian are blessed to have such great wonderful loving grandparents like you and Dad. We love you! You are the very best there is:)
With Thanksgiving coming up, boy do we have ALOT to be thankful for. And x-mas is just going to be the very best there is for Roman and Sheridan. If there is one thought I leave with you it is this...please, don't take one second for granted. Do fun things with your kids. Play games with them. Run around the house with them. Wrestle with them. Do puzzles with them. Cook with them. Read to them. Love them more than you can possibly, humanly love them. Give them attention even when your not in the mood to. If you don't normally give them chocolate or whatever, give it to them. Let them have a bowl of ice cream for breakfast. Let them lick the icing off the cinnamon rolls. Let them jump on the bed. Let them throw your pillows off the couch and line them up and play on them. All of these things are seen thru my eyes, the mom of child with a deadly cancer who will never be out of the dark woods completely. Give them what they want. Because, as all of you know, things can change in a split second and change your lives forever.
God bless all of you for your wonderful uplifting messages...WOW!!! Roman has never had so many messages before on his carepage. Our carepage is such a wonderful extended family. We love all of you. And our faithful Roman supporters from my email list, all of you are just a blessing in our lives. We know we have the support of an army out there for us at any given time. From Oregon and California to New Jersey down to Florida. What a great feeling to be us:) Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|November 19, 2008
Hello to our family, friends and new friends!
After a very long, physically and emotionally exhausting 2 days, Roman is NED!!!!!!!!!! THANK YOU...THANK YOU...THANK YOU GOD!!! We just got "THE CALL" from Dr. Wagner. I am in tears as I am typing this update. I swear I am physically ill right now...the worst headache ever probably going into a migraine, been going to bathroom for the past 2 days (I know I tell everyone way too much info), stomache is in complete knots, not eating good, not sleeping good...just everything wrong with me physically that nerves attack. The MIBG Scan came back showing no uptake anywhere at all, Thank God! However, the CT Scan did show a spot on Roman's liver, about 6 mm...I know everyone will be worried about this spot...Dr. Wagner assured me with 3 other docs looking at it that it is not NB. He even said they went back and looked at Roman's previous scans and this "spot" has been on previous scans so...no concern to Dr. Wagner...no concern to us. We will get to see this "spot" tomorrow when we see Dr. Wagner for a clinic visit on his CT scan images. Roman will also have a urinalysis done as well just as a routine check. Our visit is at 10:00 tomorrow.
This has been the worst waiting for me personally this time around. With all of the sad news out there with our dear friends, it just made it that much more difficult for us. We cannot thank all of our cp/cb families and friends who sent us the most wonderful emails and messages of support, strength, and prayer. If we could hug all of you right now we would and you could cry tears of joy right along with us.
Thank you to our dear friend and neighbor Stacey Murphy... again, for bringing by puzzles and a ball for the kids today while we were gone. Mike and I do live in the very best neighborhood ever and God was surely looking out for us when we moved here with all of you taking care of us.
Please continue to pray for all of our cp/cb families going thru exactly what we are with the WAITING for results. I am sick right now...and happy and relieved all at the same time. God Bless all of you for supporting us thru these very difficult days. Having your support, really helps more than you know. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|November 18, 2008
Hello to our family, friends and new friends!
I wanted to update and let everyone know that we still do not have CT results as of now. We may or may not get them this evening. Roman did absolutely amazing as he always does. They even wanted us to try to do the scan without propofol (sleep meds) and we said that would be too long for him to sit still. So he drank his contrast and sat thru the doc putting an IV in his hand not once but twice. He missed the first time and got it on the second time. All Roman said calmly was "that's my blood". Then, after the scan, he had to drink his little thyroid protector stuff for his MIBG injection and scan tomorrow. Got the 2 IV's taken out and was ready for his bandaids. He is so strong and never stops amazing Mike and I and all of the docs and nurses who take care of him. Not one move and not one single flinch out of him. It's odd because most parents would be calming their kids down thru all of this...... And here Roman is, my own 3 year old son, with his calm behavior, calms me down:) Incredible!!!
We have to be there bright and early for his MIBG Scan at 8:30. We will leave here at 7:00. If by chance we hear something this evening, I will update again. I want to thank our dear friend and neighbor Stacy Murphy for bringing us dinner tonight...you don't know how nice it is not to have to worry about dinner too while waiting for scan results and more worry with a scan tomorrow. We love you Stacey and God Bless you for taking care of us. We had numerous offers for dinner tonight...we are so richly blessed. And thanks to our carepage/caringbridge supporters, your messages of support is just what we need to get us thru this scan time. We love you and thank you! Jody, Mike, Sheridan and Roman Fariello
|November 17, 2008
Hello to our family, friends and new friends! We hope all of you had a great weekend. We sure did. The kids had such a wonderful time over at Derney and Duppy's house. And an added surprise for the kids was that their cousin Ian also stayed the night. So...you can imagine with all 3 grandkids spending the night with them, they were overly exhausted, but glad to be:) Thanks so much again Mom and Dad for giving Mike and I some time together. We love you! Mike and I had a wonderful dinner together and did some shopping. Mike just enjoys shopping soooo much...yea right! But we did enjoy our time together:)
Well, tomorrow we start our nerve wracking scan time with Roman. He has a CT scan of his head, chest, abdomin and pelvis at 1:30. We have to be there at 11:30. He will have to drink contrast for the scan. He usually does remarkable with this. After the scan, Roman has to be injected for his MIBG scan on the next day. I am not sure if we will get any results tomorrow or not since the scan is late in the afternoon, we probably will though. If we do, you know all of you will be informed as soon as we get home.
I do not have to tell you how scared we are. You already know that and feel our fear as best as you can. To all of our carepage and caringbridge families, you know exactly what this fear is. It is absolutely unbearable. We have never given up on faith that Roman will be ok and remain NED. It's just with all of the sad news going around with some of our fellow NB carepage/caringbridge families, it's hard to stay focused on positve thoughts for these scans with Roman this week. I am worried and the pit of my tummy has the hugest knot in it. I have been talking to God and telling him that I have lifted everything up to him... worries, fear etc. So, now I ask all of you...please pray for Roman tomorrow and Wed. Please pray for Zebbie and Nicholas OUR SHINING STAR. Please pray for Benjamin and Zoe. All of these kids have scans and testing this week. I am quite sure there are more kids, but these are the kids I know of. All of us are worried with getting results. Pins and needles, white knuckles, etc. Fear and more Fear!!!
Please pray for ALL of our fellow carepage/caringbridge families. I will update tomorrow as soon as we get home from the hospital. Until then, please pray harder than you ever have for Roman. God, please keep blessing our Roman as you have. Thanks to all of you for your support and messages. We love all of you! With never ending faith and full of nerves...Jody, Mike, Sheridan and Roman Fariello
|November 14, 2008
Hello to our family, friends and new friends!
Yesterday, Sheridan woke up with a sore throat. So, of course I called the dr.'s office to get her in. And, of course she did not go to school yesterday either. I took her temp and she was not running a fever here at home. And then, she was running a fever at the doc's office of 100.5...go figure! With everything we have been thru with Roman and chemo fevers and taking temps with him, we know what a fever is and feels like. And to me...Sheridan was NOT running a fever. Anyway, we gave her tylenol and she has not had a fever since the doc's office yesterday. This morning she was fine and ready to go back to school. Never a dull moment here at the Fariello household.
This Saturday (tomorrow), the kids will be staying the night with Derney and Duppy. Mike and I get a much needed break just the 2 of us together without children. The kids are soooooooo excited to be spending the night with their Derney and Duppy. They love it over there and get soooo much attention...and Uncle Steve always comes over to see the kids and spend time with them too. So, Mike and I won't know how to act having a night to ourselves. We are fortunate to have Mik'e parents be able to give us breaks every now and then. I know some of our dear friends parents live out of town so, we know it's a special treat for Derney and Duppy as well as Mike and I. We love Sheridan and Roman...but sometimes a break from them is what we need. Time to be just Mike and Jody and not Mommy and Daddy. Specially, with our upcoming week next week with Roman's scans. We need this time together.
Corey Nickell's Ct scan yesterday came back with showing no other spots or new tumors THANK GOD. The tumor is unchanged and Dr. Wagner told Jim and Debra that in another month we should see some shrinkage and it takes about a month after radiation to see the effects from it. So, STATUS QUO for the Nickell family. And, our dear friends in Indianapolis, The Freeman family with their son Austin, all his scans came back NED. Much love sent to the Freemans. They have been following Roman's journey since the very beginning. Enjoy your relaxing holidays now Dan and Audrey!!!
Please continue to pray for Shannon and Charlene, JayJay's mom and sissy. JayJay cp:JayJaytheJett earned his wings last week and they are missing him terribly. And, please continue to pray for Coleman cp:ColemanScott. And, upcoming scans next week for Roman, Zebbie cp:ZEBSpage and OUR SHINING STAR Nicholas cp:NicholasDefelice. All of us and many more I am sure are having scans next week. Zebbie and Roman are at just about the same time frame in after-treatment. And of course, Nicholas relapsed the same time Corey did. His scans are going to hopefully show reduction of his tumor. Just a real scary time for all of us parents. Please say a prayer for all of us. I am looking forward to getting them done and over with.
That's it for now. I will update early next week. Roman's CT scan is on Tuesday along with MIBG injection for Wed. MIBG scan. Please give strength to the Nickell family and Defelice family so they can keep on going thru treatment. And for the Dodge family, and our family, so that we may continue to be NED and free from relapse. And for all of our carepage and caringbridge families who are going thru treatment, scan time and who are just missing their angels in heaven. God, please keep blessing our Roman as you have. With hope and anxiety! Have a good weekend! Jody, Mike, Sheridan and RomanFariello:)
|November 11, 2008
Hello to our family, friends and new friends!
Tonight, we took Roman and Sheridan to see THE WIGGLES!!!!!! OMG!!!! Roman was so excited. At first it took him a few minutes to really understand what was going on, kinda taking it all in. But then, you could see his hands clapping and just getting so excited seeing the BIG RED CAR, WAGS THE DOG, DOROTHY the DINO and Captain Feathersword. They really do put on quite a show for the kids. Singing all of our favorites..."Do The Monkey", "Yummy Yummy","Hot Potato" and so many more. Derney and Duppy went, and so did Uncle Andy, Aunt Jenn and cousin Ian. All of us had a wonderful time. We got the kids WIGGLES flashlights, Captain Feathersword hats and swords. And, of course we got Roman another Wiggles t-shirt. All of these things were very pricey...but Roman getting to see his favorite show was PRICELESS!!! Click link below to view slideshow...
The show lasted about 1 hour and 15 minutes or so. As we were walking out of the center, Roman looked back and said "bye Wiggles". I thought it was sooo cute. And then as we were in the car, he said "Mommy, Ida had fun at the wiggles tonight" And Mike and I of course were thrilled that he enjoyed himself so much. Mike even said that he got a bit teary eyed as we were sitting there watching this with Roman because just one year ago, Roman was in transplant and the only thing he would watch over and over and over again were Wiggle dvd's. Mike and I were both so sick of watching them...but we'd do it all over again and again if it makes him happy:) In that moment, all we could both think about was how far we have come with Roman since last year. And as soon as Mike told me that about his teary eyed moment, I too told him we were feeling the exact same thing together. Boy are we ever married...we always think alike. I love you honey! Anyway, what a wonderful time we had together as a family, all of us together. Ian had a great time too dancing around and jumping up and down.
This was Roman and Sheridan's first LIVE show. I am quite sure the first of many to come:)
So, I hope you enjoyed the slideshow I sent tonight. God, please keep blessing our Roman as you have.
God, please give Mike and I and our families the strength to get thru scans next week. It is so hard on all of us. God Bless! Jody, Mike, Sheridan and Roman Fariello
|November 10, 2008
Hello to our family, friends and new friends!
We hope everyone had a good weekend. We did here. Roman has been doing just fine. His lymph node in his neck looks like it is a bit smaller. I have not noticed it "poking" out like before when he turns his head. Still does not take the worry away though. A couple of times today Roman complained of his right leg hurting him below the knee and telling me that both legs felt tired. This freaks us out because legs and arms are places where NB relapses. I read alot on other carepages that other NB kids have leg pain quite often...when do we or should we worry!!! I am in a constant state of worry and fear anyway. So, of course Roman telling us things like this, it sets us in panic mode. He did have speech therapy with Miss Tina today and one of the times he complained he was sitting on the floor, so maybe he was sitting on his legs like kids do...it still does not sit too well with me.....maybe I am letting fear get the best of me. I am just worried sick for these upcoming scans. More so than ever before. With all of the terrible news out there for NB kids, I can't understand why I am in any kind of fear, can you!
Speaking of worry...our sweet Corey Nickell has a Cat Scan tomorrow morning. This will hopefully show that the tumor has skrunk or even better, gone all the way. So, prayers needed for Corey tomorrow with a very important scan. We love you Corey, Debra and Jim!!!!
There a couple of carepage families that need some prayers tonight...cp:SHANNONCROWLEY got some not bad or good news today with her MIBG scan. They did not get a definite and clear NED result told to them. Just not enough clarification on an MIBG scan. Please send them some prayers because the fear of the unknown is unbearble for us parents. Also, cp:ColemanScott got some very bad news over the weekend and had a long day today. He has medullablastoma and he is a twin. His family has literally been thru a cyclone. Please pray for Coleman and family. And, also please keep the families of the little guys that earned their wings into heaven this past week. Their families and friends are trying to move forward somehow without them. Please pray for strength for all of them.
Now onto some good news to share....tomorrow night, we are taking Roman and Sheridan to see Pop Go The Wiggles Live! Roman is going to literally have a blast and will not know what to do with himself when he sees his favorite WIGGLES!!! Anyone who knows us knows the WIGGLES are his absolute favorite! HE LOVES THEM!!! Sheridan of course not so much... but I think she will enjoy going and seeing something live on stage. Uncle Andy got us tickets thru his work. So Derney and Duppy, Uncle Andy, Aunt Jenn and Ian are also going and are meeting us there. It will be a great time for all of us and the kids are going to have so much fun. And of course we will load Roman up with WIGGLE gear and fun things to buy for him!!!
So, that's all I have right now. Keep those prayers coming for all of our friends and for Roman. Please pray his leg pain is nothing and is an isolated thing. God please keep blessing our Roman as you have. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|November 7, 2008
Hello to our family, friends and new friends!
Since my last update, I have heard more bad news in the Neuroblastoma world. It never ends. Kody Edwards earned his angel wings the day before yesterday. Today, JayJay earned his angel wings. His Mommy's name is Shannon and he has an older sissy Sheridan's age named Charlene. Their carepage is cp:JayJaytheJet Please go and send them some loving support. JayJay just came home on hospice within the past week or so. And then of course I already told you about Brody Hurt earning his angel wings a couple of days ago.
That is 3 (was 4 but I cannot remember his name) young boys, who lost their battle with Neuroblastoma in just a matter of 4 or 5 days. I do not have to tell you to how important prayers are right now for these families. I cannot describe the mood and feelings I get personally when I read these kind of updates when I get them. Unfortunately, I get them quite often. Sometimes I know the bad news is coming and I get scared opening up the updates. Sometimes I immediately cry, and other times it hits me later when I am not expecting it. When it comes like this with more than one child losing their young life at once, it is more than difficult for us cancer parents who still have our cancer warrior child still breathing and very much alive. Not a guilty feeling, but rather a feeling of WHY their child, and why ANY child at all, comes to mind every single time NB takes a life away.
I look at Roman and Sheridan playing right now, here on the living room floor doing their "karate" and jumping and kicking around all over the place like they love to do and I cannot imagine the pain for these parents and their families. I wish to God we could take it all away from them. Please, remember to just say a prayer for strength for these families. I appreciate it and I know they do as well. And, don't forget about JayJay and sending his mommy and his sissy a message.
Please continue to keep praying for Roman, Corey Nickell, Joe Melville, Nicholas Defelice, Nolan Kenter, Nathan Ormsby, Eli Horn, Shannon Crowley, Zebbie Dodge, Bradley Jude, Destiny Ross, Jessica Rose, Chloe Hightower, Alyssa Ramos, Toby Benton, Laura VanDerBos, Madison Bailey, Noah Biorkman, Nathan Couch, and Daniel Depatie, and of course if I forgot someone. All of these children above, are in the fight of their lives every day. With either being NED and living in fear of relapse like us or being newly diagnosed, some having scan time again, and some have relapsed and in treatment all over again. These are just a few of the families I follow. Not all of them, but most of them that I could remember. That's not including the other children I follow without cancer, with other types of cancers and other diseases. I only wanted to do this to show my supporters just how many kids approximately (I follow) that have NB and who are battling each and every day just like us. That is entirely way TOO MANY kids and families going thru this nightmare. God, please bless ALL of us going thru this journey with so many different levels and stages. And, God bless all of you for supporting us with Roman.
Jody, Mike, Sheridan and Roman Fariello
|November 5, 2008
Hello to our family, friends and new friends! Well, as they say in the childhood cancer world..."plans change all the time, even without notice."
Today, Roman had his appointment for his hearing aid molding/fitting at 1:00 at the Crestview Children's Hospital by us. We have been there before a few times for hearing exams during Roman's chemo last year and post transplant. The last one there was in Jan of this year. We met a really great audiologist named Tommy Evans. I did remember him one time from early last year. Tommy knows Chip from Cardinal Hill where Roman's most recent hearing exam was. Tommy re-examined Roman by doing way more testing than Roman has ever had done before. Roman's age is on his side now for getting the best results. After re-testing Roman's hearing with both ears, each ear seperately, with the good ear even having background noise in it and only listening with the "bad" ear, Tommy came to me and said "well, I have good news". He told me that he feels Roman does NOT need a hearing aid AT ALL!!!!!! That's right! I repeat, no hearing aid needed for Roman at all!!! I immediately said all along that Mike, Mom and I knew Roman did not have a hearing problem. He hears everything just fine.
Tommy told me that he feels Roman's loss in his right ear is so minimal, that a hearing aid would actually not benefit him and would do more harm than good. It would distort what he is actually hearing now already. And as far as speech goes, he said this minimal loss would not affect his speech at all due to the fact that he has a good working normal left ear and it is only a very minimal high frequency loss in the right ear. He said Roman has the sounds, because of one of the tests he did today with pointing at pics, similar to what Miss Tina our speech therapist does with him. He has the sounds because he heard them. Roman picked out every single pic with both ears being tested. Tommy did say he wants to see Roman every 6 months for hearing exam follow-ups until the age of 5. And, he also said that when he does get into school, and he is having some trouble hearing the teacher because of background noise etc, he would then get an FM system for Roman so he could use that in school only if needed.
So, as I said, plans change all the time in the childhood cancer world...today, those plans changed for the GOOD!!!!!!! Never a dull moment. As Roman and I were leaving Childrens, I told him "God keeps sending us miracles all along this journey and we take them when we get them"... and Roman not needing any hearing aids AT ALL after what he endured last year, is truly a miracle:)
Today, we also got a phone call from "Our Angel" Lauren...she called to let us know she was relieved to hear that Roman's visit yesterday went in a good direction. She got to talk to Roman and Sheridan a bit and she also told us she was teaching English to a few adults and one high schooler over there. She said her and Joey are very happy together and doing very well. She did tell me she felt "disconnected" and "out of the loop" since she's overseas. I of course told her that I knew if she were here with us, she would be right by my side making ribbons and passing them out and doing whatever I needed her to do. She would be SO involved with our gold ribbon campaign, and of course with the kids. They miss her terribly. Lauren, you know you should NEVER feel disconnected from us, no matter where you are in the world... you are and will always be "FAMILY" to us in every sense of the word. We love you and miss you and can't wait to see you when you come home:)
Pease keep praying for our caring bridge and carepage families and friends...specially the Nickell family and the Defelice family...both families have had rough, long and stressful past couple of days at the hospital for chemo treatments. Nothing has gone right for either family from taking meds, to the staff screwing up things. So, say a prayer for these families that they get thru the rest of the week without any more problems. And, so many of our friends are having scans this week and up coming this month like Roman. Please pray for all of us who are in the scariest of times wating for results. The waiting is agonizing. God, please keep blessing our Roman as you have. Thanks to everyone who left us such encouraging carepage messages and emails the past 2 days. We love all of you! Jody, Mike, Sheridan and Roman Fariello:)
|November 4, 2008
Hello to our family, friends and new friends!
GREAT NEWS!!!!!!!! Our visit today with Dr. Wagner confirmed his lymph node theory. He is such and incredible doctor and Mike and I have ALWAYS felt very confident with Dr. Wagner as Roman's doc. Today, confirmed that even more for us. It is an enlarged lymph node. It's not a tumor or NB. He feels this is just one of those things that happens to little guys Roman's age. He does feel it will go down or get smaller. We discussed why Dr. Wagner felt pretty confident that it was nothing to be concerned about. Reasons are...he is overall doing well, eating, drinking, gaining weight, growing, playing hard etc. Also he checked Roman literally from head to toe. Felt no other apparent enlarged lymph nodes anywhere else on his little body. Checked ears, mouth just EVEYRWHERE. So, he came to the conclusion that with Roman otherwise doing well, and no other enlarged lymph nodes, he felt good about just keeping an eye out. We need to of course watch it to see if it gets bigger God forbid. But, since we go back in 2 weeks for scans, Dr. Wagner will check this out then again.
Mike and I feel better that Roman was checked out, at least we know it is a lymph node and not a tumor or anything else. However, Mike and I will both feel better knowing that Roman will have his scans done in 2 weeks to just make sure...I did ask if this were God forbid cancer again, would it show up on his MIBG scan, and Dr. Wagner said "absolutely, because it is soft tissue and MIBG picks up on that as well". So, YES, we will feel much better when scans are done in 2 weeks.
Roman will also be getting a flu shot in 2 weeks. Mike and I are not big fans of the flu shot, but since it is Dr. Wagner's recommendation and in Roman's best interest, Roman will of course get the shot.
Tomorrow, Roman has his fitting for his hearing aid for the right ear. I will update more tomorrow on that experience.
So, over the last 48 hours, I have not slept well at all. I have had the biggest agonizing feeling in the pit of my gut, I have not eaten too well, I have been worried to tears and I could go on and on and on. But, thru it all, I know and we know that we have had your support, your prayers, your dinner offers, your babysitting offers for Sheridan etc. and your encouraging messages that have kept us going. It is in these most trying, most difficult and most scariest times, that we feel we are so blessed to have the circle of support we have. We love all of you! Thank you again!
God, please keep blessing our Roman as you have. Jody, Mike, Sheridan and Roman Fariello:)
|November 3, 2008
Hello to our family, friends and new friends!
Polly our coordinator just called and said that Roman's appointment tomorrow is for 1:00pm. And, she also said that Dr.Wagner wanted to let me know that "he is not alarmed about this" (so glad HE is not alarmed) and that "little guys Roman's age, sometimes when they are fighting an infection of some kind, tend to have a lymph node that might pop out". Well, until Dr. Wagner sees this, touches it, examines it and then tells us it is nothing for us to worry about, Mike and I are very much going to be WORRYING!!!! Much easier on the outside looking in. Believe me!
Just pray that Dr. Wagner is right with his lymph node theory. Mike and I can only pray that this is the case with Roman. I will of course update more tomorrow as soon as I can. And, to thank all of you for the encouraging words of support. We are so blessed. Roman is so blessed. Your messages today to us have made us feel more than loved. Thanks again and God Bless! Jody, Mike, Sheridan and Roman fariello
|November 3, 2008
Hello to our family, friends and new friends!
We hope everyone had a good weekend. What I am about to tell you is not meant to scare you, but to keep you informed. I struggled with even sharing it with you until more info has come from it, but you are our "family" and our circle of support. I could not keep this from you or anyone else for that matter.
Over the weekend on Saturday afternoon, I was wrestling around with Roman in our living room. Sheridan was playing in her room and Mike was about to go in for work to address a computer issue. Roman was on the floor in front of me and I was sitting on our couch looking down at him. He turned at one point, and I noticed a little "bump" or "knot" sticking out on the left side of his neck. I immediately went to touch it with my finger... and all you cancer parents know when you see anything like this, your heart just stops beating. It is about the size of the tip of a finger. It sticks out at different times when he moves his neck. I don't have to tell all of you the feeling right now for Mike and I. We are scared to death.
I called Polly our coordinator this morning and emailed her as well. She called me back right away and told me that Dr. Wagner wants to see Roman tomorrow afternoon...I just don't know an exact time yet. Polly said she will call me back to let me know a time. Until Dr. Wagner looks at this and we know what exactly we are dealing with, it is going to be very LONG day and night for us here.
This could be nothing as we are obviously hoping it is. My mind is racing and it has taken everything in me to not think the worst case scenario here. Please, just say a prayer for Roman today. Pray that God keeps blessing our Roman as only HE has been able to do. My gut hurts. I am very nervous. I am more than scared. This cancer journey has been anything but simple and easy. It has taught Mike and I that there is never a dull moment...literally. Sheridan is off school tomorrow. So, she will be with Mom while I am at the clinic with Roman. I will let all of you know a time as soon as I know.
Also this morning, as if anyone needs to hear more bad news...one of the litttle guys I talked about last week in a few of my updates earned his angel wings this morning. Brody Hurt. Please say a prayer for this family as they try to go thru the next few days with plans etc. I cannot even fathom their pain. I hate Neuroblastoma!!!
Thanks to all of you for your support thru out Roman's Cancer Journey...as it appears we will ALWAYS need your support and your prayers for Roman and for all of our cancer warrior and cancer angel friends. I will update again later. Until then, very hopeful and praying with everything in me. Jody, Mike, Sheridan and Roman Fariello
|November 1, 2008
Hello to our family, friends and new friends!
We hope everyone had a wonderful Halloween! I was way too tired to do an update last night. We had a blast!!! Both Mike and I dressed up along with the kids. Mike was a vampire and I was a Pirate. Roman was Spiderman during the day yesterday and then last night changed into his Superman outfit. Sheridan was an angel. Last year, we did not get to have fun as a family on Halloween because Roman was in transplant. We were seperated. Mike was with Roman at the hospital and I was home with Sheridan taking her around. That was very difficult on all of us. But, what a difference a year makes...we DEFINITELY made up for lost time and had so much fun.
Click on link to see us all made up for halloween!!! Enjoy!!!
I went to Sheridan's classroom Halloween party to help. All of the kids looked so cute in their costumes. And of course, I was the only parent that dressed up for the kids:) I LOVED it! My mustache kept falling off, but the kids loved seeing me dressed up. Mom was here with Roman while I was with Sheridan. Mom took Roman to Big Boy yesterday, just the two of them together. The pic of Roman on the floor with Derney, playing on the blanket, I thought was so cute of them. Then, Miss Tina came for Roman's speech therapy. Of course Miss Tina brought Halloween goodies and treats for both Roman and Sheridan. THANK YOU Miss Tina, you are so sweet to our kids:)
Mike went to work dressed up in his vampire attire and WON best costume. And, they were having a chili cook off too and guess who WON that TOO???? Yes, Mike...my husband. Everyone who knows us knows that Mike is the cook, not me:) So, he had a great day at work yesterday. Good job Honey!!!
Then Dad (Duppy) and Uncle Steve both came over after work. Uncle Steve dressed up in some clown gear that we had here at the house. He pulled Roman around in the wagon. We went out walking from about 6:00 until 7:30. Then, Uncle Andy, Aunt Jenn and cousin Ian came over towards the end so we could see Ian dressed up too. Ian looked adorable! We really did have a great time.
I cannot believe that it is November 1st already. Time just goes by so fast. Thanksgiving will be here in a couple of weeks and then Christmas, and then a new year. Unbelievable! Well, that's it for now from me. I hope everyone enjoys the weekend. God, please keep blessing Roman as you have. Please everyone keep praying for Corey, Nicholas, Nolan, Coleman, Brody, Kody, JayJay and just so many others. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|October 30, 2008
Hello to our family, friends and new friends!
Well, tonight we have had the most fun carving our pumpkins for tomorrow night for Halloween!!! The kids were saying "gross" scraping the bottom and all of the gunk out of the pumpkins. They are just so excited. We took plenty of pics. So, enjoy!!!! Click on Link and then hit slideshow at top left!
We also got our NICK POWER bracelets in the mail yesterday from OUR SHINING STAR'S Mom Denise. I colored the inside of the letters with a sharpie so all of you could see it. One of the pics is of my wrist supporting OUR SHINING STAR'S bracelet, then it is Corey Nickell's with Courage 4 Corey and of course followed by Roman's with RescueRoman.org. I have so many kids to support, I am going to have to grow more arms!!!! Denise, THANK YOU for sending us the bracelets for Nicholas!!! He is of course OUR SHINING STAR!!!!!!!!!
I also wanted to thank those of you who sent us donation money for RALLY 'ROUND THE GOLD RIBBON! From all of the ribbons I sent out last week and the week before, we are starting to get some donations coming in. It will certainly help us with postage, ribbon, safety pins, envelopes and zip lock baggies. We are so happy to be spreading the awareness for all children battling childhood cancer. It would not be happening if we didn't have your help and support. So, HOORAY for RALLY 'ROUNDTHE GOLD RIBBON!!!!!!!!!!
I guess that is it for now until tomorrow's pics from the kids dressing up for Halloween.
God, please keep blessing Roman and all of our carepage and caring bridge families. Love to all of you!!!! Jody, Mike, Sheridan and Roman Fariello:)
|October 29, 2008
Hello to our family, friends and new friends!
OK...here is a therapy release from me to you...I have to let it out. So, bear with me...
And, here we go again with the FEAR I was telling you about. I just learned from one of our dear families we follow that their son was sent home on Hospice. His carepage is cp: JayJaytheJet. We learned this news also from Destiny Ross's mom, who just sent Roman his Halloween card and picture of her daughter Destiny a couple of days ago. This does not sit too well with all that is going on in our NB world right now. There are 3 more boys that I follow who were also sent home on Hospice care recently. They have caring bridge sites. They are Kody Edwards, Brody Hurt and Jacob Stovall. All 3 boys have been battling NB for a while now. I hate sharing such sad news with everyone, but this is our world. This is why my FEAR for Roman is very much alive 24/7 non stop. Please, keep these boys and their families in your prayers. That is 4 boys all sent home with NOTHING left for them to do. Regina (Destiny's mom) is really having a hard time because Jay is just as much her son because their families are real close. Please pray for her to have the strength to be there for her friend (Jay's Mom). Regina, we are thinking about you!
All of this news of course does not make me feel real comfy and confident knowing scans are coming. All I can do is pray and lift everything up to God as I have been doing all along. I feel like crying right now but I cannot because I have Roman and Sheridan right here with me. As all of my fellow cancer moms can relate, we are the STRONGEST of moms when we have to be. Right now, with Roman and Sheridan being right here with me, is one of those STRONG times. And then later on thru out the day when I have a moment to myself, I will go and tear up somewhere, get it out and then get my STRONG face right back on again. It's like a cycle and part of my Cancer Mom routine. With these boys and their families facing what they will face, even though we have never met them, my heart aches for them. We are NB family, and we will be there for them in any we can. And if that means sharing their sad news with all of you to get more prayers lifted up, then so be it.
Thanks for listening to me this morning. I hate starting the day off like this. And we think we have it bad, just think of those 4 families and what they have to face everyday from here on out with their boys. And our dear friends Jim and Debra Nickell with Corey and Denise and Brian Defelice with Nicholas and Team Larson with Coleman. These families are in a really bad spot right now taking in this view of these boys who are now on Hospice. Their view of all of this is even worse than mine is. Their fear is worse than mine is. Because their fear turned into reality with Realspes. We follow each other's stories, and take the good with the bad. It's what we do. We are FAMILY in every sense of the word. Please pray for all of the families I mentioned and the ones I did not. There are so many. And, I wanted to thank all of you for the emails and messages from my last update...it means more than you will ever know, specially right now. God Bless! Jody Fariello
|October 28, 2008
Hello to our family, friends and new friends!
I wanted to let everyone know that Roman will be fitted for his hearing aid for the right ear next Wed. at our Crestview Children's location. Mike and I decided not have the additional test out in Liberty Township due to the simple fact that it would not change the outcome of Roman needing a hearing aid. This test was more or less a clarification of the thresh hold of Roman's hearing in the right ear. Why put him thru another test for the same ending result. So, I will let all of you know about the fitting when we go next week.
The kids are excited about watching "Great Pumpkin Charlie Brown" tonight. And, to be honest, I am excited about it too:) As soon as Roman and I picked Sher up from school today, she reminded me that there are only 3 more days until her party at school and Halloween. She is more than excited.
I hope all of you got to read AJ's dad's research. I do not know why 20/20 or one of the big news media don't pick up on his findings...can you imagine what an impact that would have on research funds for our children??? We can only hope and pray and continue to do what we have been doing for our children.
Today, our sweet Corey cp:coreynickell, finished his last radiation treatment. He had 15 total to his head where his tumor is. He was suppose to start chemo yesterday, but his counts were not where they should be to handle more chemo. This of course was not what Debra and Jim wanted to hear. A week is forever in the Neuroblastoma cancer world, specially when your praying to God for it to kill and shrink a tumor. A week is a LONG time to wait to get chemo going again when your fighting for your son's life and every day counts. Please continue to pray for the Nickells and for Nicholas "our shining star". Both families need our prayers and support, and just so many more families as well.
I cannot even begin to tell you the FEAR I have for Roman's upcoming scans. Debra knows my fear as well as all of our fellow NB cancer parents do. I cannot even begin to put it into words for you. With every day that goes by, I look at Roman and and think to myself "Jody, he's doing fine, he APPEARS to be fine". That's exactly what Debra and Jim thought about Corey too. See, there again, there is no comfort zone, no cushion, no safety net. No NOTHING to help ease my fear and Mike's fear. Everyday is filled with FEAR. Roman's scans are not until Nov. 18 and 19 and I am already not dealing too well. As I have said it before, this is our life now. We live in small increments of 3 months at a time. Sometimes even less than that if a symptom pops up with Roman, God forbid. I have had many people tell me that I am strong. And, don't get me wrong, I am. But there are times when I feel like I am not strong at all...like with scans coming up. It's every day that we get time with Roman, that means more than anything to us. When I read other carepages, my heart aches and I just hold onto Roman even harder. I am telling you this because we need your prayers too. I know that alot of you pray daily for Roman. Well, please don't ever stop.
God, please keep blessing our Roman as you have. Thank you for all of your prayers, your kind messages on our carepage and email messages. They really do help us get thru. Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 26, 2008
Hello to our family, friends and new friends!
We hope everyone is having a good weekend. We are. Friday night, we got to babysit cousin Ian for a couple of hours. Sheridan and Roman were so excited to have their cousin here with them. As soon as Ian stepped into our house, the kids were off and running with their dump trucks pushing them around all over the house. They had so much fun together. We love you Ian!!!
Then, yesterday, Sheridan was invited to Macy's (from preschool last year) birthday party. The girls got to wear their pajamas and have a SPA birthday party. They got to make their own body lotion, have make-up put on, make hair bows and of course had yummy ice cream cake. Sheridan was so happy to see her buddies from preschool. I know she misses them ALOT. The pic of the girls is Ava, Macy, Chloe and Sheridan. They looked so cute!
Then, while we were at the party, Mike and Roman were supposed to be going to find a costume for Mike to wear. But, Roman had other plans...he fell asleep. So, when Sheridan and I got back from the party we ate, and after Roman woke up we went school clothes shopping while Mike and Roman went costume shopping. Plans happend still, just not at the time we originally thought:) So, we are all set for Halloween here at the Fariello household. We have candy, we have costumes...now we wait for Friday to get here. Sheridan and Roman are sooooooo excited.
The website is still doing really well, and getting alot of hits everyday. The ribbon orders have slowed down, but, that was to be expected. Until we get our non profit status, and we can officially "take orders" on the website, we can still fill any and all orders that come in just like we have been doing. Debra and I are excited to be meeting with the attorneys hopefully sometime this week for our RALLY 'ROUND THE GOLD RIBBON mission. I will keep everyone posted.
I hope all of you got a chance to read AJ's dad's research on the funding of the charities that our wanting your support in the form of money. I truly believe that some day our time will come for all children battling childhood cancer. I believe that with so many cancer parents out there like myself and Debra, like AJ's dad Bob, like Mimi Avery, the PAC2 and so many countless others working hard for the same thing, we are bound to get the change we need and want for our children. If you have not read the research, I urge you to do so. It is quite eye opening and shocking to see how much an operating officer makes for the charities he mentions. It will make you think twice about where your money goes. Anyway, just my 2 cents there.
The other 2 pics are of Roman holding a Halloween card and pic he got from a fellow NB warrior, Destiny Ross. Destiny is 6 years old. They live in Irvine Kentucky. Roman was so happy to get mail and specially with a pic inside from a fellow NB warrior! Thanks again Regina and Destiny. Destiny's carepage is cp:DESTINYLOVESYOU. Much love to you guys coming from Hebron to Irvine:) And the other pic is of Roman and Sheridan holding their footballs they got from our family getting Boo'd last week from one of our neighbors.
Prayers still very much needed for Corey and Nicholas. And I am asking for prayers for all of our fellow cancer parents and families who seem to be having a very rough week with missing their beautiful children in Heaven. I want them to know we are thinking about them and hope they get the strength to continue thru the days, months and years ahead without their children, for Mike and I are still blessed to have our Roman with us everyday. And we thank God each and every day for that time with him. God, please keep blessing our Roman as you have. Much love to all of you who support Roman and our family on his cancer journey, we are truly blessed. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 23, 2008
Hello to our family, friends and new friends!
Roman and I mailed out some more ribbon orders today at the post office. It feels so good to know that our message is getting out there for all children with childhood cancer. I have been honord to "meet" so many fellow cancer parents, grandparents, family friends and even strangers who just want to help us with RALLY 'ROUNDTHE GOLD RIBBON thru the website. It will happen, one GOLD RIBBON at a time:) I spoke on the phone yesterday with the audiologist who did Roman's hearing exam at Cardinal Hill. He looked at previous hearing exam results that Children's did and came to the conclusion that Roman would benefit from doing one more special hearing test before getting him fitted. One of the tests from Children's did not have the same result as one of the test he did. So, he wants to make sure and be thorough. He told me that he felt confident with the exam he did on Roman, and that it was ultimately up to us to have this other test done. He also referred me to a colleague of his at the new Children's facility out in Liberty Township. I know it's a far drive for us, but, if it's what Roman needs, we will do it. So, I have to call out there to make him an appointment for this special test. After we have the test, then Roman will have an appointment to get fitted for his hearing aid. So, I will update more on that as it happens.
Please keep the prayers coming for Corey and Nicholas and all children fighting for their lives. God, please keep blessing our Roman as you have. Please, take this time to DONATE blood and/or PLATELETS if you can. You WILL be saving a life...and it just might be a child's life. Love to everyone and God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 21, 2008
Hello to our family, friends and new friends! Roman had speech therapy today with Miss Tina. He is doing very well. Miss Tina and I talked and Roman will start seeing her every week on Tuesdays here at our house. She feels he will definitely benefit more if she has more time with him to work on the high frequency sounds that he is missing with his hearing loss in the right ear. So, thanks to the Rescue Roman fund, Miss Tina is taken care of financially. I also have a call into the audiologist who did Roman's hearing exam at Cardinal Hill to see when he wants Roman to come in and be fitted for his hearing aid. So, Roman is doing well. We of course have the scans on our minds coming up in November. We are enjoying the fall and looking forward to Halloween. I am going to be a Pirate. Roman is going to Spiderman and Sheridan is going to be an angel. Mike is still undecided, but he will be in costume along with us. We missed so much last year while Roman was in transplant, we are not going to miss a thing this year! Sheridan is so excited about her Halloween party at school during the day on Halloween. I have volunteered to help, so Mom will be here with Roman that day. I am excited to help and see all the kids dressed up. The best part for me is that Sheridan is so happy that her Mommy is coming to the party:) Corey Nickell got to go home today. I know that Debra is so happy to be home form the hospital. Being home is where they should be:) Still continue praying for both Corey and Nicholas. The website is doing very well. I have come across some general comments and more than one has been a question about some other website out there called www.goldribbons.com. It is a great website and full of info. However, there is one MAJOR difference between our websites....we do not want people to feel obligated to PAY for a gold ribbon. The only way to make a difference and get the message out there for our children is to pass them out for free and plenty of them. THAT is our difference. We are not charging or selling ribbons for people to wear. We simply are asking people to give a donation, even the smallest amount because a pack of safety pins are about $2.69 and postage for about 200 ribbons is about $1.85. A roll of ribbon is about $5.00. So, our ribbon makers are willing to help us make them for free and feel the awareness needs to get out there for all children battling childhood cancer (thank goodness they feel that way or I would be broke with how many helpers we have). For this reason alone, we feel our website is not even close to the other websites out there. The donations we get will keep this on-going until we see GOLD RIBBONS across the country. The average person is not going to buy 200 ribbon pins for about $2.00 a piece and give them away for awareness to 200 people...THAT'S THE DIFFERENCE BETWEEN US AND THEM. That idea is not going to happen and it has been proven that it has not happened already. We don't want any money for profit, just donations to keep on buying ribbon, pins and help pay for postage all across America. This is the ONLY way to get people to spread awareness for our children. I thought I would talk a bit about it because more than a few people have brought that website, along with others, to my attention. The other websites are great and all are doing good in their own way...we just see things differently and want to get the awareness out there to way more people in BULK. And, so far, the message is getting out there and people are requesting 100 or more ribbons to help us get this message out there for childhood cancer. It is working!
I guess that is all for now. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. Thank you for supporting our Roman and for all the help you have given to us and to the Gold Ribbon campaign. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 20, 2008
Hello to our family, friends and new friends!
Roman and I just got back from the post office and mailed out another 10 orders for Gold Ribbons! Absolutely amazing! I had to cancel last night's ribbon making because I was not feeling too well. I feel just a tiny bit better today. Mike and the kids are just fine, so, I have no clue where I got this from. Oh well, we better get used to it because it's that time of year again.
I wanted to throw out a huge THANK YOU to one of our neighbors who BOO'd us last night! Whoever you are, you made Sheridan and Roman very happy with the goodies and toys inside the pumpkins. Look out...a BOO could be coming soon to a porch near you:) We have the best neighbors ever!
I also wanted to share with you another research finding from AJ's dad Bob. Click Here
AJ died earlier this year and his dad is such an inspiration to cancer parents all over the country. Please read the attached info on cancer funding comparing it to American Caner Society, Susan G. Komen and the Lukemia & Lymphoma Society and CureSearch. Telling what their top person makes a year etc. And telling how much of YOUR donation is actually a DONATION. Please read, very informative. Thank you AJ's dad for enlightening us and proving that CHILDHOOD CANCER is SEVERELY under funded.
I guess that is it for now...please pray for Corey that his counts come up so Debra and Jim can take him home. He's been in the hospital for almost a week now. Corey is starting to lose his hair all over again. And prayers still needed for Nicholas OUR SHINING STAR.
God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. God, we thank you for our website getting so much attention for all children battling cancer. Last time I checked we were 50 hits shy of 1000!!!!!!!!!! God Bless all of you and we thank you for your support for our Roman. Jody, Mike, Sheridan and Roman Fariello:)
|October 17, 2008
Hello to our family, friends and new friends! Well, I still have been very busy with ribbon orders...I will be mailing out, as of right now, almost 600 ribbons again on Saturday or Monday. People are just really amazing and sooooo many lives touched by childhood cancer. People tend to share how they are touched by childhood cancer on our website email and it is just so amazing that people in general really want to help get the awareness out there for our children. Today, is a VERY important day for Roman and our family. One year ago today, Roman got his SECOND chance at life again with his own stem cells. I cannot believe that a whole year has gone by already from his transplant day. As most of you are aware, the whole month that we (the 4 of us) were apart from each other, was the LONGEST period of time ever. Mike and I have never seen Roman so sick. Roman went thru so much pain, and sickness. It was the hardest thing to have to trust the docs and let them "take over" for this process. Roman had already been thru enough we thought at that point...how sicker could he get! Boy, were we not prepared to see him in that way. And to pray to God each and every day that we NEVER see him sick like that again. It is so amazing that the very process that kicked him down so hard is the one thing that could "save" his life at least that is the hope still. Roman is one tough little guy. And thruout evreything he has been thru, he appears to be just Roman. It has been a year of growing for the kids and for Mike and I. And of course a year of fears. Unfortunately, our fears came true with the news of Corey and Nicholas. That fear is EVER so present and with me daily. Debra and I have talked and she knows what I am feeling. We both hate it that we are not on the same path anymore. This year with the bad news, came ALOT more good news. I cannot begin to tell you how many amazing new people we have met being on this journey. Mike and I are blessed in more than many ways. We have great families, friends, new friends and support from strangers, still knocking on our door wanting to help. God has blessed us with many more blessings than I can count. Roman having cancer is not a blessing...what has happened the second the news got out up til now, has been the biggest blessing for us. On this very important day for Roman and our family...we still hold onto the fact that by the grace of God and everyone's prayers, Roman is here with us. That is the real blessing. We do not take ANYTHING or ANYONE for granted. We are still taking things with a 'one day at a time mindset'. We have to. We do not have a choice in that. We live everyday for Roman and Sheridan and our family. We have come a long way since last year at this time. And we thank God everyday for keeping Roman safe.
Still need bodies for Sunday's ribbon making. Men, there are jobs for you as well like cutting the ribbon and opening safety pins. You don't actually have to make the ribbon itself. So, we have jobs for everyone. Please keep Corey, Nicholas, Isabella and Rachel in your prayers. Both girls have lukemia, and have recieved transplants already. Both girls are at Cincy Childrens. I know both families. It is fitting since Roman was in transplant 1 year ago, and that their cancers are different than Roman's, that they know they too can hold onto hope just like we did last year. Pray for all children fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. God, please keep blessing our Roman. Thank you for your support thru out Roman's journey. And to our carepage supporters, your messages mean the world to us. Jody, Mike, Sheridan and Roman Fariello
|October 16, 2008
Hello to our family, friends and new friends! WOW...WOW...WOW....I have been a really busy person these days...and I am LOVING IT!!!!!!!!!!!!! Our website, is off to a very good start. Today, I sent out 700 GOLD RIBBONS all over our country. People wanting 20, 50, 100, 200. It has been great that SOOOO many amazing people want to help make a difference for our children battling cancer. I have never launched a website before, I have never launched an "idea" like this before and made it come to life...I will do whatever it takes to fight for our children with cancer. I am flying "solo" obviuosly because Debra is with sweet Corey. I told her "I GOT IT".... Debra, I love you and this is happening for our kids...just like we wanted it to. Who knows where this will go and what it will lead to. As long as it gets attention for our kids, I will do my best at whatever I need to do. So, on the news of our website getting ALOT of attention, I NEED BODIES...I NEED HANDS...I am having a making ribbon session on this Sunday around 6:00 or even after if someone can come a bit later. I want everyone who has volunteered to know that it brings tears to my eyes that WE, are making this possible. Without your help, Debra and I would be LOST! So, please come on Sunday and let's make some more ribbons. I have orders already from today for 450 ribbons. So, they are coming in from all over. It's so exciting.
This month is Down's Syndrome month. Our dear friends, Lisa and Tom Turner (carepage is Maraangel) have the the most adorable, beautiful daughter named Mara with Down's Syndrome. Lisa has been here to help make ribbons with us and they are friends of the Nickells. Lisa, Mara and Elijah (Mara's brother) came to the walk last weekend to help RALLY 'ROUND THE GOLD RIBBON and they walked with us. Such a sweet amazing loving family. Lisa told me a horrible statistic, 92% of women who find out they have a child with Down's Syndrome chooses abortion as the answer. I am in no position to tell anyone what to do as a women making a decision but...to me...there would be no decision to make...if the docs told us about Roman having cancer while he was in my belly...that would NOT have changed us having our most precious Roman. It is the same thinking with Down's. Lisa and Tom, could not imagine their lives without their precious Mara.
Today, my dear friend and Roman supporter Robyn O'brien, was on the new hit TV show THE DOCTORS (Dr. Phil spin off directed by his son Jay). She was on to bring awareness for our children with food allergies, like Roman's peanut allergy. She is in the position to bring awareness for our kids with food allergies from her website www.allergykids.com
Roman and sweet Emily VonderMeulen (an angel in heaven already from her peanut allergy), are both on Robyn's home page of her website. Robyn has had Roman's story on there since last Oct. We thank you Robyn for helping us get the awareness of food allergies for our kids and Roman and Emily's stories. We love you MOMMA WARRIOR!!!! Go to www.thedoctorstv.com
to see today's show and Robyn!
So, we still need ALOT of prayers for Corey and Nicholas and so many others battling and fighting for their lives. So many kids with upcoming scans like Roman. Please pray that God keeps all of them safe.
I gotta go check for more ribbon orders!!!! God Bless and thank you for supporting Roman, and our www.RALLYROUNDTHEGOLDRIBBON.org
website and mission. Jody, Mike, Sheridan and Roman Fariello:)
|October 14, 2008
Hello to our family, friends and new friends! WOW!!!! Our website is really getting some attention! That is so awesome for us and all children battling childhood cancer. We have almost 500 hits. And I have recieved alot of emails requesting ribbons to be sent to them from New York, Texas, Iowa, Conneticut, Mass. I am quite sure real soon here we will have gold ribbons across the country...just what we wanted:)!!!!!!!!!!! One Gold Ribbon at time! It's so exciting! So, to all of our ribbon makers, you have Wed. night off, but I am thinking about maybe doing something on Sunday here at the house. I will be mailing out alot of gold ribbons on Thursday from people requesting them on the website. So, RALLY 'ROUND THE GOLD RIBBON is taking off and spreading all over!!!!! HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Roman is doing just fine. Sheridan was glad to be back at school today. And, me...well I have been very busy replying to ribbon requests...I LOVE IT!!!!!!!!!!!!!!!!!!!!!!!!!!! Anyway, I have much moe to share with all of you but no time to do it in. Please keep the prayers coming for Corey and Nicholas "Our Shining Star". They need prayers everyday along with so many others. Roman needs prayers for his upcoming scans next month. So, please tell God he has alot of prayers that need to be answered:) God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven way too soon. Thanks for all of your support for Roman and our RALLY 'ROUND THE GOLD RIBBON campaign and website. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 13, 2008
Hello to our family, friends and new friends! From my last update, I left everyone hanging about some wonderful news to share. I emailed Malaak Rock (comedian Chris Rock's wife) and THANKED her for sending us thier amazing gift. I debated or not to email her and Mike talked me into it because on her website www.angelrockproject.com she of course has a contact us section. So I did. And....she replied back to my email. She must be one of the sweetest most loving giving people in this world. She is doing and has done so much good for so many. And now, the Fariello family is on that list of good that she has done. I won't share our email in detail, but she is interested in our campaign, our work for Rally 'Round The Gold Ribbon. Also, on her website, she has a section of "angels" working on doing good things for people and making change. She had said that she would like to feature me as an "angel" of the onth and that an intern would be contacting me soon. So, I will definitely keep all of oyu informed on things. Malaak is an ANGEL herself. And I told her I would be honored to do an interview. So, very exciting news there.
Now, I want to share with you even MORE wonderful news. I spoke with Melissa Gross, a Roman supporter since last June. She discovered us thru the Enquirer story last year on Lauren and Roman and our family. When I say that God has a hand in all of this...I mean it. Melissa sent me a message on Roman's carepage the other night. Oh how Mike and I shed the tears as I read it to him. It was explaining that she knew exactly what we were going thru right now. She is the mother of a stage 4 NB survivor!!!! Kevin was diagnosed at the age of 2 and a half. Kevin is her miracle son and Kevin just turned 16!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! How wonderful is that for their family! We emailed back and forth and finally last night, we talked on the phone for 3 hours. We felt an immediate connection and since she has been following us since last June, she said she feels she knows us pretty well:) They live in a small town outside of Columbus Indiana. So, about 2 hours away. We talked about meeting so we could see Kevin and he could see Roman. We go to the clinic together on the Nov. 20 but we definitely want to meet befor then. She and Kevin are hopefully planning on coming on a weekend day soon so we can meet and even make ribbons together.
It has not been an easy road for them with Kevin. He has many side effects both from chemo and radiation. Like some behavioral outbursts, stunted growth, digestive issues, kyphosis or "hunch back" and I am sure I forgot some others. They have had some scares but no RELAPSES! Kevin just last year had surgery to have 5 benign tumors removed from his liver. With this EVIL cancer, our kids are more subject to secondary tumors, and God forbid cancer in another form. Kevin has had a few episodes that required surgery to remove a few tumors from his hands. Thru out this ordeal, Melissa is and has been a very positive Mom. She told me that yes, there are rough times still, but considering the alternative we all are aware of, KEVIN IS ALIVE!!!!!!! They are a real, live childhood cancer survivor family! That is the only thing that matters. She said there is ALOT of LOVE in their home. And I could tell. I have more to share but I would writing another "book". Melissa did tell me as she has been following us, that our story is mirrored exactly in so many ways to theirs. She said she felt as though she was reading about her own life while reading my Roman Updates! One thing is she has an older son just like our Sheridan is older. She just had to reach out to me. And Melissa, God Bless you for doing just that. You have replenished a pot that just about had only a drop of hope left inside, if that. Thank you and we cannot wait to meet you and see you and Kevin:)
I told you it was great news! Yesterday we took the kids to our local farm and let the kids pick out some pumkins. They had fun there. Then we went to two different halloween stores to find Sheridan a costume and for Mike and I. We finally found a costume at the 2nd store for Sheridan. She wanted to be an angel. Mike and I, still found nothing to wear. Then we took the kids to the grocery store...what an event!!!! They were really good considering we were out all day just about. We had a fun day with the kids. That's all that mattered anyway:) I hope you enjoy all of the pics!
This weekend coming up, we are passing out GOLD RIBBONS at the Boone County Pee Wee football league tournaments. I still need a couple of people to ehlp pass out ribbons if you can. I have everything, I just need bodies. Even if you can only do it for a couple of hours, that would help. I am assuming we will be there all day, both days passing out ribbons to al of the families etc. I am also hoping that my walking, talking GOLD RIBBON costume will be completed by then so I can wear it to the fields this weekend. and who knows...maybe some day you will se me on I-75 at rush hour on a Friday Night getting the attention and awareness for our children battling cancer. I will do anything for our children. If that means getting attention that way, I will:) So, if anyone wants to help this coming weekend, send me an email please. And, I think we will take this Wed. night off from making ribbons. All of us need and deserve a break. Please check out the website, it is up and running and spreading awareness. WWW.RALLYROUNDTHEGOLDRIBBON.ORG
We have had alot of hits for the one day it has went live.
God, thank you so much for sending Melissa a message that we NEEDED her and her story with Kevin. Thank you for keeping Kevin safe the past 13 years. And for giving his family the strength to keep on going thru it all. God, please keep Corey and Nicholas safe in your hands still. They need you and so do their families. God, please keep blessing our Roman and all kids fighting for their lives each and everyday. And for all of the angels who have earned their wings into heaven way too soon.
It's our children that keeps me going and going and going. And I will not stop until they get the recognition and funding they deserve. Thanks to all of our supporters...your support and messages and emails fuel my desire to keep on going for our children. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 11, 2008
Hello to our family, friends and new friends! WOW!!!!!!!!!!!! Today, I did not know what to expect for our first walk for Cincinnati Children's. It was such a beautiful day and whoever organizes this walk deserves a HUGE KUDOS!!!!! There were a TON of people walking and a TON of teams. Everything was so nice for the kids. Freebie stuff and lunch from our dear friend and Roman supporter Buddy LaRosa. Literally a TON of pizzas from LaRosa's today. The kids got to ride a few rides and have their faces painted as you can see from the pics I sent. We had a great turnout for RALLY 'ROUND THE GOLD RIBBON team. Thanks and far beyond thanks to the following amazing supporters: Debra Nickell's Dad (the pins were so great for today's walk)! To Jamie Landheer and family, Lisa Turner and family, Sabrina Girty and family, Kathleen Bertline and family, Jenn, Andy and Ian Fariello, Derney and Duppy Fariello, and to the many family members and supporters of Debra, Jim and Corey Nickell. With all of your help with making the ribbons, passing them out and walking, getting financial support and just supporting Debra and I for our mission, we COULD NOT HAVE DONE IT WITHOUT ALL OF YOU!!! I was bummed that I did not get to say good-bye to alot of you...but know I am sure we will be seeing you again to make ribbons:) What a very special day for the Hemotology/Oncology floor and Cincy Childrens, but most of all, what a very special day for Roman and Corey. I am bound and determined to get this message out there...and I will. I know our floor raised ALOT of money. I know our team raised approximately $2000.00 (I think). And, even though we did not get to pass out as many ribbons as we would have liked to, Kathleen Bertline and myself passed out ALOT of ribbons to people as they were eating at their tables. People started putting them on immediately. I even met another fellow cancer mom who lost her son 3 years ago named Zach Herringer. Their story was featured on the news last night. I gave her 200 ribbons for their team and their supporters. It was just a really nice day for us. One to remember. Next year, we will be even BIGGER!!!!!!!!!!!! Roman and Sheridan had a good time and they were both so good. They wanted to ride rides as soon as we got there this morning at 8:00am. They finally got to ride some rides this afternoon. I wanted to personally thank the "ANGEL" who sponsored Roman for $100.00 on October 6. The first name and initial was Kim M. So, if that is you and you are a Roman Supporter, please email me or send me a message on Roman's carepage. I would love to send you some Rescue Roman gear like a bracelet, t-shirt, pin and even some gold ribbons to pass out! So, please if that is you, send me an email at Shivers@insightbb.com. Thank you and God bless you for sponsoring our Roman with such an amazing gift. And to ALL of our online supporters who somposored us for the walk. We appreciate your support so much. OK, I am POOPED OUT!!!!! Been up since 5:00am this morning. I will update more tomorrow with more good news to share about and interview and a survivor story. God, thank you for this day. Thank you for putting such amazing people right in front of Mike and I. God, please keep Corey and Nicholas safe in your hands. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. Today, was for ALL of our children with cancer. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 10, 2008
Hello to our family, friends and new friends! Well, since my update this morning, I have a few more things to share with you. Sheridan is not feeling too good. I just took her temp and she is running a fever of 100.1...so....she and Daddy may not be joining us for the walk tomorrow morning. I also have found out some disappointing news but it will not stop us...we are NOT allowed to pass out the Gold Ribbons at the walk tomorrow. I know it bites but, that will not stop us from getting the message out there...we will pass them out as people are leaving the walk and festivities tomorrow. They can not say anything to us then because the walk will be over. So, onward we go as planned:) A bit of Celebrity news to share...since Malaak Rock's (www.angelrockproject.com) generous donation to Rescue Roman, I thought I would share with all of you that today, at 4:00pm Eastern time, her husband Chris Rock will be appearing on Oprah. So, watch Oprah if you can. Also, Polly our nurse coordinator called me with dates and times for Roman's 3 month check up and scans. On November 18th, he will have a Cat Scan at 1:15(and draw labs too) and his MIBG injection around 2:30 . Then on the 19th, he will have his MIBG scan at 9:00. Then on the 20th, he will have a doctor visit at 10:00 with Dr. Wagner in clinic to discuss results of everything. I know it goes without saying, but with all of our friends' news recently, PLEASE start praying NOW. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. We thank you for your prayers and support. It's what keeps us going every day. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|October 10, 2008
Hello to our family, friends and new friends! Alot of info to share today so bear with me here:) We had our parent/teacher conferences the other night for Sheridan...she is doing just fine as we expected. Her teacher did tell us that Sheridan is a bit of a "gabber" and I immediately said "gee, I wonder where she gets that from":) But to know she is learning alot and enjoying going to school makes us feel good. Roman is doing just fine too. You know things are "normal" here when I have to "yell" at Rome and Sher to stop fighting and hitting each other! I feel that is all I do sometimes is to be a ref for the both of them. It is in those times where I enjoy the "normalcy" and take it and run with it...for I know there are many families out there who would love to hear what I am hearing. Thank you God for the "normal" times you give me everyday:) Roman will have scans again next month. I have a call into Polly our coordinator to get the exact dates so we can plan for Mike to be off and for Mom to be here with Sheridan. He will have a Cat scan, MIBG scan, labs, urine and a visit with Doc. Wagner. I will let you know the dates when I find them out. Debra and I are really getting excited about our RALLY 'ROUND THE GOLD RIBBON website. It is just about done. It should go live sometime tonight we hope:) The website name will be of course...www.rallyroundthegoldribbon.org We can't wait either until we get our non profit status so we can really get going on things like addressing some kid friendly products for a gold ribbon to be put on for our children fighting the fight everyday. We are bound and determined to make this happen...and WE WILL! The website is informational with some statistics about childhood cancer and some very important links that we feel you chould check out. We hope it takes off and goes across the country in every state. Of course nothing goes without any kind of problems that may come up, but it will work out...it has to it is for our children aho are in the fight of their lives. So, maybe later tonight or early tomorrow, check it out and give us some feedback. We would appreciate it...neither Debra or myself have ever done anything like this before with creating a website so...any help or insight out there would be greatly appreciated. The sole purpose is AWARENESS for our children. It is NOT out there at all. We hope to change that. I have attached my "manifesto" (as Mike named it), again...Roman has quite a few new supporters on his carepage and I feel what I wrote a couple of months ago, has come full circle now with our precious Corey relasping and OUR SHINING STAR Nicholas relaspsing as well. The FEAR is unbearable now for Mike and I. Now that Corey and Nicholas have relapsed, we feel like we are "barely hanging on" the edge of a cliff. So, please, if you have not done so yet, read my titled "JODY'S FEAR" that I have attached. It is more important now then ever before because of Corey and Nicholas.
Tomorrow is our walk at Coney. We have raised well over $1000.00 as a team. And I am sure that will go up much more after tomorrow. Our team is called of course...RALLY 'ROUND THE GOLD RIBBON...we have 31 registered walkers for the walk. It is not too late...if you want to walk c'mon out tomorrow and register for our team and walk with us. Here are some things that my team members need to know...
Walker check in is from 8:00 til 10:00 am. Also the kids carnival starts at 8:00. Opening ceremony is at 10:00. The walk starts at 10:15. From 11:00 to 1:00 lunch will be served. And at 2:00 it will end. Now, we will be meeting in the WEST parking lot near the Picnic Grove area. You will look for the banner with the Letter "R"con it for our team. We will meet there by 8:00am. If you still have to turn in money(checks, cash, credit cards)...I will direct you to the WALKER CHECK IN lines. (I still have to go there too.) There you will turn in your gifts along with gift deposit slips (make sure checks are made out to the hospital and on it put ONCOLOGY). And in return you will get a number bib, lunch voucher and a prize ticket. As soon as you are done, come back to the Banner "R" and we will then all walk together as a team for the opening ceremony. We also have some "special" hand made ribbons for our entire team to wear and keep afer the walk. Debra Nickell's dad had them made for all of us. We will also be handing out many many ribbons from our bucket pails to EVERYONE we can come in contact with. So, any questions at all, call me on my cell I will have it with me tomorrow 513-476-0369. We hope to see everyone there! And to our sponsors...we could not have done this without your support! Go Team RALLY 'ROUND THE GOLD RIBBON!!!
Tomorrow is also Debra Nickell's birthday...I already know what she wants for her birthday........Debra, we love you and that is the exact same birthday present we want for you too:) So, as a team, we will also be celebrating Debra's birthday together.
I guess that is it for now. WHEW!!! Alot of info...I warned you:) Prayers are still needed for Corey, Nicholas, Chloe, Roman and ALL children fighting the fight of their lives. God Bless all of you for your ongoing support of Roman. Jody, Mike, Sheridan and Roman Fariello:)
|October 8, 2008
Hello to our family, friends and new friends! I first want to thank all of you for the birthday cards, and birthday messages on my email and on Roman's carepage. Our carepage family is so awesome...Roman loved looking at all the cute pics sent with his messages! We celebrated at Big Boy just like he requested. He did have a visit from his Speech Therapist Miss Tina yesterday also. She brought Roman a Spiderman Memory game, and a Spiderman falt disc ball. She of course brought Sheridan something too...Moon Sand and for the both of them some Hershey Kisses and juice boxes. Miss Tina, THANK YOU so much for your kindness...you are so good to us and to both kids. We are so glad you are part of "our family" and that you will continue to work with Roman on his speech, specially after he gets his hearing aid. We are blessed by having you for our Roman:) This morning Roman and I went to Chidrens to meet Jamie and Shelly Hightower (Chloe's parents) and to also meet Brandy Benton (Toby's mom). I have already met Brandy, but she wanted some Gold ribbons to pass out so she is fully armed with Gold Ribbons. Brandy, it was good seeing you today and thanks for all of the info you shared with me. Jamie and Shelly were waiting for Chloe to have her MIBG scan done. They brought me the most beautiful GOLD RIBBON pin to wear and a beautiful GOLD RIBBON charm to put on a necklace. And, they brought Roman a Cars pillow that Jamie's mom made for the kids. We want to THANK YOU both for our gifts and your friendship. It is so strange...in a great way of course, how many parents with cancer children immediately bond when they meet each other for the first time. We wished we could have seen Chloe but she was in her scan. I told Roman we can see her on her carepage and send her messages. He was ready to go home...he probably thought we were there for a scan!!! Jamie and Shelly...it was so nice to finally meet you...and I also loaded them up with Gold ribbons to take back and spread awareness.
I have not talked to Debra Nickell yet today...I know Corey had radiation at 11:00 today, and he gets his last dose of chemo today for this first time getting it...they might get to go home today! I just don't know yet for sure or not.
I know I told everyone about the deposit made by Chris Rock's wife Malaak yesterday...well I found out who was behind it all...our dear friend and supporter Robyn O'brien, founder of AllergyKids.com She emailed me yesterday and told me she just met with Malaak on Friday. I emailed her and thanked her immediately. On her website, she has Roman's story still at the bottom of the homepage underneath our angel Emily's story. I would love to someday maybe join forces with Robyn on a "dream team" of our own to do research on food allergies and the connection to Childhood Cancer. I truly believe there is a link between the two...specially with Roman's cancer Neuroblastoma. Robyn, again, THANK YOU for your ongoing loving support and awesome "connections". You are amazing! Go to her website and be informed of Food Allergies and chlidren. Tonight, we have ALOT of our gold ribbon making supporters coming to the house.
I went to the grocery today...and I got so angry. It is to the point with the Pink ribbons on products, that it is just on everything! Like Mike said..."people are going to be de-sensitized to seeing them and won't care anymore what they stand for". I must say that after today...I agree. I am going to make sure when we do our product push for the Gold Ribbon, that we do not let it get out of control.
Well, prayers are still needed for Corey and for OUR SHING STAR Nicholas. Nicholas is getting a port put in tomorrow and hopefully will start his chemo right away. And Corey, please pray that radiation and the drug combo will get rid of the "grape" all together. We love both of your boys and your families. God, thank you for giving Mike and I the gift of TIME with Roman. His birthday means the world to us as we know other families don't get to celebrate birthdays like we did, because they are in treatment or their child is an Angel in heaven already. We so appreciate the "normal" days and count each and every second of them. God, thank you for sending great people into our lives like Robyn and Malaak Rock. What great things they do for families like ours.
God, please keep blessing our Roman and all kids fighting for their lives, specially Corey and Our Shining Star Nicholas. And, for all of the angels who have already earned their wings into heaven way too soon. Thanks to all you for supporting us and praying for us. Jody, Mike, Sheridan and Roman Fariello:)
|October 7, 2008
Hello to our family, friends and new friends! I have some good new to share and some not so good news to share. We still need prayers for Nicholas Defelice "Our Shining Star". They found out yesterday that his bone marrow biopsies came back positive with cancer again, along with the relapse on his skull. This is not good news overall for Nicholas. But, with all of us praying, anything is possible. My heart and my gut hurts for them. I sent Denise an email telling her to maybe come here for treatment as they are looking for the VERY best for OUR SHINING STAR. Please pray for them at this most diffuclt time. Corey Nickell got just the opposite news yesterday...his bone marrow biopsies came back negative with no cancer cells found. Corey goes today I think to get fitted for his saftey mesh mask for radiation. It looks like the Nickells might get to go home on Wed. sometime. Prayers still needed obviously for them as well as Corey fights to get rid of the "grape" in his head. We love you all. Our prayers are with the Defelices and the Nickells. One more to mention...Chloe Hightower is having her Cat scan this morning and lab work done. Chloe will have her MIBG scan tomorrow. Her most recent cat scan back home in West Virginia showed some questionable changes in her lungs. The Hightowers are dear friends of the Nickells, and now ours. Roman and I are going to the hospital tomorrow to meet the Hightowers and give them some Rescue Roman gear and of course Gold Ribbons. The Hightowers have a birthday present for Roman and a gift for me as well. I cannot wait to meet them. Please, say a prayer for them that they get good results. Dr. Wagner is their doc too.
Now...for the best news ever......TODAY IS ROMAN'S BIRTHDAY......HE IS 3!!!!!!! HOORAY!!!!!!!!!!! Roman, Mommy, Daddy and Sissy love you so much. We will celebrate the big 3 by going to "Big Boy" as Roman calls it. He picked there to eat tonight for his birthday. Happy Birthday Buddy! We love you! And, a reminder for tomorrow night...Ribbon Making at 6:30 here at our house. We need to crank out ALOT of ribbons so we can go to the walk on Saturday feeling confident that we can give EVERYONE there a gold ribbon. There are over 3000 walkers for the walk...not including family and friends who are going but are not walking. So, we need to make alot of ribbons.
And, the greatest coolest thing happened yesterday...Mike called me and he was checking Roman's RescueRoman account...this past Friday, a deposit of $2500.00 dollars was put in there. It was such a shock to us who sent it...everyone knows the comedian Chris Rock...Mike traced the email back to his wife, Malaak, who has a website called www.angelrockproject.com
We do not know how she found us or stumbled upon us, but we are ever so grateful for the loving support. She just paid for Roman's single hearing aid that he needs. They run about $2000.00 per hearing aid. My Mom always said to me..."the Lord will provide" and HE has and HE is for Roman and our family. We are working on sending them a huge thank you as soon as we can find out more detailed info.
I guess that is it for now. Please keep the prayers coming for our friends who are going thru the worst of times right now. And, please keep the prayers working for Roman...they are working and he is a walking miracle. God, please keep blessing our Roman and all kids fighting for their lives ech and every day. And for all of the angels who have already eanred their wings into heaven way too soon. We thank you for your loving continued support for Roman and our friends. Jody, Mike, Sheridan and Roman Fariello:)
|October 5, 2008
Hello to our family, friends and new friends! Today, we celebrated Roman's 3rd birthday here with family and friends. His birthday is not until Tuesday but we celebrated today. He got lots of cool stuff and sleepwear which he really needed. I'd like to thank our families and friends for celebrating with us today. The pics were from today and the one pic is of Roman being a total mess from eating a powder donut the other day. Today, when we were singing Happy Birthday to Roman, my eyes got a bit weepy. Not enough for anyone to notice, but they did. I could not help but think here we all are watching him blow out his candles and make a wish...boy we sure know what we would wish for don't we! I look at him and cannot imagine our lives without him. Roman, we love you and your Sissy more than life itself. Your happiness of every minute of every day is what matters to Daddy and I. That goes ditto for Sheridan. Today was also bittersweet because the Nickells were suppose to be here for Roman's party. We thought about them alot today. I only got to talk to Debra once today. I miss her already. We used to talk so much and now with Corey and treatment and all of this nightmare all over again, we will not get to do that like we used to. I am going tomorrow evening and bring them dinner. I am bringing them dinner for tomorrow night and Tuesday night too. Marsha Benjamin and her husband dave sent some dinner my way tonight for the Nickell's too. So Debra and Jim, the next 4 nights of dinner is taken care of and hopefully you will get out of there by Friday. We are waiting for the results of the bone marrow biopsies on Corey and Our Shining Star Nicholas. Both boys should get results tomorrow hopefully. I also want to thank our families, and Marsha Benjamin and Rachel Re for coming tonight to make ribbons and count inventory. We have a total of............. 4, 400 ribbons!!!!!!!!!!!!!!! It's so exciting! And, with people coming on this Wed. to make more, we will have even more for the walk. That is awesome. Talk about getting something done with a power of a small army behind you!!!! I am just honored to have all of your help as well as your continued support. It makes me really know that Debra and I are doing a good thing and it is WORKING!!!!!!!! Gold Ribbons everywhere. We do not need a certain month to just do this in...EVERY MONTH IS CHILDHOOD CANCER AWARENESS MONTH!!!!!!!!!!! I also want to tell people that Rachel Re has found a NEUROBLASTOMA survivor. His name is Daniel, and he is 21 years old. He did his treatment at Memorial Sloan Kettering in New York...now he did not do the same protocol as Roman and Corey, but the fact that he is a STAGE 4 survivor is amazing. He is in college studying to be a nurse. He has some developmental delays, but he is alive and thriving!!!! Rachel was on a mission to find me a survivor long term out. Because of Corey and Nicholas, I have been in and have had a bit of gloom and doom attitude and outlook. Even though I am human and I never know what my feelings are sometimes from one minute to the next, I pray to God every single day for Roman to be safe. I even tell my parents up in heaven "your not getting your grandson just yet, he has ALOT to do down here and a very long life ahead of him to do it in". That is my daily ritual. I have had a setback mentally with Corey and Nicholas...but rest assured I am a fighter. I have been all of my life. I am going to fight on with these Gold Ribbons for our RALLY 'ROUND THE GOLD RIBBON campaign. With everything I have in me, I will keep on going. I want changes for our children. I want new, SAFE OPTIONS for relapses for parents like Jim and Debra and Denise and Brian. I want to see GOLD RIBBONS on EVERYTHING!!!!! And we will ge there, one ribbon at a time. I want to thank everyone for their prayers this week. It has a been a heck of a week for us. Debra and Jim, Denise and Brian, we will be praying for clear bone marrow results. We love both of your sweet families. God, please keep Corey, Nicholas and Chloe Hightower (carepage is chloehightower)safe in your hands (coming to Cincy tomorrow for followup scans, friends of the Nickells, now friends of ours). God, thank you for today...for giving us the precious gift of time with family and friends and Roman turning 3. God, please keep blessing our Roman and all kids fighting for their lives each and everyday. And for all of the angels who have already earned their wings into heaven way to soon. God bless all of you for your support for our Roman. Jody, Mike, Sheridan and Roman Fariello:)
|October 3, 2008
Hello to our family, friends and new friends! It has been another very long and emotionally exhausting day today for me. I know this is going to sound really strange and come out really weird, but ever since Debra and I have become close on our sons' journeys I felt like I had a "partner" in every aspect of treatment. Now, with Corey relasping, I feel "lost" and "left behind," almost like I should be there with her. It is a relationship obviously that not many people have. Debra and I are blessed with each other. I just wish I could wave that magic wand and make all of this go away for Corey, Nicholas, Roman and so many others in this fight for their lives. I did talk to Debra a couple of times today. Still exhausted, still scared, still in shock and ready to FIGHT!!!!! When she told me today that they were in FIGHTING MODE...I told her that we would be there right along with them in FIGHTING MODE. I also told her that MANY of our Roman supporters have volunteered to make meals or do whatever is needed. So, I have organized a list. I will be in contact with some of you about this list who want to help. I cannot go into details again because they have not updated Corey's carepage yet tonight. I am sure they will update when they can. The prayers are still needed for them as well as OUR SHINING STAR Nicholas Defelice. I really think I am still in shock myself trying to take it all in...all the while trying to remain "NORMAL" for Roman and Sheridan. Not an easy task at all. But a piece of cake compaired to what the Nickells and the Defelices are going thru.
On Sunday, we will be celebrating Roman's 3rd birthday. He will actually be 3 on the 7th. I cannot believe he is going to be 3 already. I think how he has grown up in more ways than one with all he has been thru. We will be having family here during the day for his birthday cake that Aunt Jenn is making for him (peanut free of course) and then at 6:30 I have more people coming to make ribbons. We need ALOT of ribbons made. Today, a new Roman supporter who found us thru Rescue Roman, named Kathleen Bertline and her daughter Haley came by to give Roman his birthday present. Kathlen has been such a wonderful person who has just dived right in to help making ribbons and buying pins for us. She has joined our team for the walk and has raised ALOT of money in doing so for us and for Rally 'Round The Gold Ribbon. She brought Roman coloring books, crayons,a sticker book and Scooby Doo matchbox cars. Her daughter also gave Sheridan her very own Leap Pad and case and many if not all of the cartridges for it. Kathleen, I cannot thank you enough for being such a wonderful person to us and the Nickell family and for Rally 'Round The Gold Ribbon. You are a very fine example of what GOOD is out there in times of need. God Bless you Kathleen and we love ya! That's it for now. Please keep the prayers coming for Corey, Nicholas and Roman and ALL children fighting for their lives each and every day. And for all of the angels who have earned their wings into heaven way too soon. And, to personally thank all of you for reaching out to Mike and I because of our fear for Roman. Our fear is unbearble. Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello
|October 2, 2008
Hello to our family, friends and new friends! Well, I first want to thank so many of you that went to Corey's carepage and left such loving and supportive messages of strength. I cried reading all of them. It means more than you will ever know to Mike and I that our Roman supporters have nothing but love and encouraging words for the entire Nickell family. If you have not gone to leave them a message yet...please do....www.carepages.com type in coreynickell just like I have it typed. Love to all of you who poured out your hearts to them and I know it's not easy to find the words, but we have to support them right now. They need us. Trust me when I tell you this...carepages are WONDERFUL to parents like us and it is more than wonderful to know that prayers are being sent from everyone, including strangers. So, I thank you for going to the Nickell's carepage, it means so much and takes such a small amount of time. I know as of now the Nickell's have not updated their carepage, so I cannot give out any info obviously about details of the day today. I do want to let all of you something because so many of you have emailed me with worry. I was with Debra and Jim, Corey and both sets of grandparents. Mom came over here to be with Roman and Sheridan. I HAD to be there for the Nickells today. I know if the roles were reversed here, they would be there for us just the same. I do want you you all to know that as soon as I saw Corey today, I got the biggest lump in my throat and wanted to cry and just let it all out...however, as adults, we know we cannot do that obviously in front of him or any child for that matter. So, I immediately turned my mood around and smiled at him and hugged him tight:) It's amazing when you think you don't have any strength and all of a sudden you do:) Debra and Jim are amazingly strong parents. They have to be now more than ever. Debra called me tonight and she sounded exhausted of course. It was a very long day for them and not much rest at home until they go back tomorrow. Again, I will leave the details for them to crank out. I will update more tomorrow after Debra calls me. OUR SHINING STAR Nicholas had his bone marrow biopsy this morning...so much needed prayers for him as well...GO NICK POWER!!!!!! As for me, I am emotionally drained. Everytime I look at Roman now, I am in more fear than ever. Not that the fear wasn't there before this week, it's just way more REAL, CLOSE TO HOME and MORE OBVIOUS now more than ever! Thanks again for all the prayers! Jody, Mike, Sheridan and Roman Fariello
|October 1, 2008
Hello to our family, friends and new friends! I struggled with how I would say this to all of our Roman supporters if it were to happen to us...Corey Nickell has relapsed. Corey Nickell has relapsed. Corey Nickell has relapsed! No matter how many times I say it, it kicks me right in the gut. Our dear friends Debra and Jim got the news today following a very long nerve wracking morning with the MIBG scan. More pics and even more pics of Corey were needed. Debra called me the first time this morning and we just cried together. Then, this afternoon, after their call with Dr. Wagner, she called me again and we cried, I mean sobbed, I mean hyperventilated, I mean could not breathe, together. The words just don't come out. The pic I have sent to all of you is of Roman and Corey at Roman's bowling benefit taken by Mikki Schaffner. I am really at a loss here. And Debra and I have both just as recent as last week said to each other on the phone "I don't know how we would be if this were to happen to Roman or Corey"...little did we know that a week later, we'd be where we are today. The fear is unbearable. The fear Mike and I feel for them is unbearable. The fear for Corey is unbearable. The fear of all the unknowns are unbearable. The fear for Roman is unbearable. I must tell you that unless you skim thru my updates, you know that this wek has been just awful for us. First Nicholas Defelice and now our very own Corey Nickell. I am in a fog. I am not feeling all that "positive" right now. I feel like our boys and all children with this horrific EVIL of a cancer called NB, have been thru ENOUGH. When is enough ENOUGH??? What is it going to take to get the attention we need for more funding for our very own "Dream Team" so no more beatiful children relapse or DIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! MY GOD HOW MANY CHILDREN HAVE TO GO THRU THIS!!!!!!!!!!!!!!!!!!!!!! I am so sick and tired and sick and tired of our children of this country not getting the PROPER HUMAN RESPECT and ACKNOWLEDGEMENT that our CHILDREN DESERVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My heart is not without heavy pain. I ache for Debra and Jim. I ache for Denise and Brian. 2 families, in 1 week, both boys relapse in the same area...behind the left ear on the skull. I have no words to describe what I am personally feeling. Corey is every bit of "our son" just as much as Roman is Jim and Debra's. Our families have been thru EVERYTHING together. This part of Corey's journey will be NO DIFFERENT. We will be there for them, thru it all. Every single step of the way. Debra and Jim and Corey were suppose to coem over here tonight to make ribbons with us. Well, when I talked to Debra earlier, I told her we did not have to make ribbons and that I could come out there to see them and hug them and just be with them. Debra's exact words were "no, you need to make ribbons for Corey and Roman"...and make ribbons we did. We made 700 ribbons tonight. Now more the EVER, we need your help and support. The Gold ribbon needs your help and support. Corey needs your help and support. Please go to www.carepages.com and type in coreynickell just like I have it and send Debra and Jim a message of strength. They need to hear from you...RIGHT NOW. I want to see as many of your names on Corey's carepage as possible...even if you have NEVER gone their before, PLEASE go now. Thanks to Marsha, Stacey and Jamie Landheer for coming tonight to make ribbons. You all are so special to us for your devotion and wanting to help. Also, the news that is really not such an important thing now and seems so MINUTE and MEANINGLESS is that from Roman's hearing test today, he needs a Hearing aid for the right ear only. And, more speech therapy with Miss Tina, thanks for going with us again Miss Tina and for hugging me and being an ear:) Love to all of you for your support for Roman. See, this is ehat I feared the most...and it happened today to our beloved Corey. More tomorrow!!! God, please give Debra and Jim and Corey the strength to continue on, please let them know when they can't carry themselves, Mike and I will for them. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. Now go support the NICKELL FAMILY!!!!!!!!!!!! Jody, Mike, Sheridan and Roman Fariello:(
|September 30, 2008
Hello to our family, friends and new friends! It has been a day...I got bombarded with emails from my previous Roman Update. I have tried to start a Roman Update off and on thru out the day today, but I just could not find the words. Then it came to me...there's not any right or wrong words for any of us going thru this cancer journey with Roman. It is in every sense a "one day at a time" motto. Alot of you sent me the most beautiful and inspirational words to encourage me at my most obvious time of need. I want you to know that I truly appreciate it. It means the world to me knowing that I am cared about as well as my family. I just feel sometimes that alot of you just don't grasp it or get it, even as much as I try to explain it. Neuroblastoma is a very horrible disease and it has a very harsh reality. I told Mike that maybe we should have an information night with a Q & A session afterwards. I do realize that alot of you do not like or want to hear about relapses and death. However, if you are being real and honest with yourself, you would feel what we feel and be just like Mike and I. We are the parents of a very young son who has a very deadly cancer. What has happened to OUR SHINING STAR Nicholas, could very well happen to Roman. That is why it hit me yesterday the way it hit me. Nicholas was our bright spot in our very dark NB world. Now, it is completely dark, even darker with no light in sight. I can't get people to understand that I am not being negative, nor have I given up on Roman, I am just stating the facts. The cold hard facts of NB. It is a very deadly disease. There are no cures. There are no options with this disease. The few that are out there are all playing a big guessing game with children's lives. Nothing is set in stone. If a child has High Risk Stage 4 NB like Roman, and they relapse, it means that the cancer itself was even more aggressive than the drugs used to try to kill it. It means that all the chemo, the radiation treatments, the oral chemo and the surgeries and even the transplant itself did not kill the cancer off. It means that NB is stronger than it's victims are. I do not want anyone thinking that I have given up on Roman...NEVER EVER WILL I EVER GIVE UP ON MY SON!!! I do not want anyone thinking that I am over here just gloom and doom in front of Roman and Sheridan....NEVER WOULD I EVER DO THAT! I don't want anyone thinking that I have blinders on either. OUR hope relapsed yesterday. Our prayers will NEVER relapse. I told my mom in law today..."find me a thriving adult NOW who had High Risk STAGE 4 NB as a child who was diagnosed at the SAME age as Roman and who went thru the SAME protocol as Roman, then I will have HOPE" . I honestly don't think that person exists. That, my dear Roman supporters, is not giving up on HOPE that is facing and dealing with REALITY. Our reality. Mine and Mike's. Trying to explain that to you is pointless because you will never comprehend "our reality". I have told all of you many many times before... my writing is my therapy, only it's not in a office. Remember I said a while ago...there is no book for me to get that will tell Mike and I what to do and how to feel at any given time while we are on this journey with Roman. It is a very difficult thing to do to try to find a good balance between living life to the fullest with Roman and dealing with the harsh reality of possible relapse and death. I truly feel that alot of you are in some sort of denial when it comes to Roman. And I cannot tell you how to feel just like you can't tell me how to feel...but I can inform you of the facts and the statistics. I read alot of the carepages to get info...on new drugs that a child is trying or new therapies or studies that are going on. What works well and what does not work well. And yes along the way, I tend to get very much involved with some families. Like OUR SHINING STAR. It is hard not to when they are where you are. I do not want to be blindsided by not knowing things. I want to be informed. I do not know where Roman's journey will take us. What I do know are the facts. And the fact still remains that Roman has a very deadly cancer with no known cure and very high relapse rate. Prayers are what has helped us this far and prayers are what will help us continue on. Now, onto some more info...Roman has his hearing exam tomrrow at 4:00. This is a very important test as it will let us know if Roman needs hearings aid(s) or not. When we get back home,we will have alot of people here to make ribbons starting around 6:30. We have ALOT to make for some upcoming events. As soon as I get the chance, I will update about our hearing visit. Also tomorrow Corey Nickell has his MIBG scan for his 3 month follow up. Debra and Corey will be here with us tomorrow night to help with the ribbons. Please say a prayer for Corey's scan that it goes as planned and that we get NED results. Of course please continue to pray for Nicholas and his family...he will have a bone marrow biopsy on Thursday to see if he relapsed there too. Go Nick Power!!! I will update as soon as I can tomorrow night. God, please give Mike and I the strength we need to keep on going. God, please keep Nicholas and Corey both safe in your hands. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. Thanks for listening and for your continued loving support for Roman and for our family. Jody, Mike, Sheridan and Roman Fariello:)
|September 29, 2008
Hello to our family, friends and new friends! I am sad right now beyond comprehension...OUR SHINING STAR, Nicholas Defelice (carepage is all caps NICHOLASDEFELICE), has RELAPSED!!! I just got the message from his carepage. I am never usually at loss for words...until now. Nicholas was our one and only hope. The one Neuroblastoma child that we follow who was doing great with being NED who was ahead of Roman. We have used Nicholas as our "STAR" for Roman. Nicholas was the one child that we could count on for getting a fun carepage update with what's going on with their family. The one and only child that I SMILED back at when I saw those beautiful blue eyes smiling in pics. Tonight, Denise and Brian were told the news that Mike and I are ever so scared of...RELAPSE. Nicholas is their only child. Nicholas is their world. Denise and Brian are going to be thrown into the unknown all over again. Oh how my heart breaks and the tears just come out for them. Tonight, I can finally say that after 18 months of this cancer journey, I have lost hope. I have lost all hope. I imagine my feelings are feelings that could change...but it's very hard to change when all that we are surrounded by is relapses and death. The past 2 weeks we have lost 5 kids to NB. Since starting this journey with Roman, I have lost count. I have lost count with how many kids have been taken away from their parents and families. I have lost count of how many kids have relapsed with NB or other childhood cancers. I really have nothing nice to say about the fact that it is still Childhood Cancer Awareness Month and NO ONE knows that, excpet for us parents who are living, breathing, eating and sleeping the nightmare daily. In our faces 24/7. I think it is really sad that on my refridgerator, I have 2 kids beautiful faces who have already gone to heaven, Julian Avery (carepage JuliansWorld) and Victoria Houston. Does anyone else have pics of kids who have been "murdered" or "taken away" by CHILDHOOD CANCER??? More than likely NOT!!! I PRAY to GOD that someday Roman does not grace your refridgerator. I pray to God that Nicholas will not grace my refridgerator. Your refridgerators probably have normal things on them like cute pics of your kids and cute magnets, drawings, etc. You get my point. I really am scared. For the first time in 18 months, I am scared for Roman's life. I guess Nicholas relapsing has thrown me into reality. A horrific reality. I am not sure if up until this point that I actually knew how harsh the reality was for us. With each child that relapses, a piece of us gets chipped away because our child is still alive and fighting the fight, which makes the fight that much more difficult. With each child that relapses with NB, it is that much harder to think that Roman is still SAFE and could still survive this. I am scared for him. I am scared for Corey. I am scared for Nicholas and the road he and his Mom and Dad are forced to go down all over again. Please pray for this family. Go to their carepage NICHOLASDEFELICE and leave them a message of support and prayer. Let them know they are not alone in their journey. I am so devastated and drained. And that is just me, can you even imagine how Denise and Brian feel tonight!!! Prayers and GOLD RIBBONS are ways to help right now. We need to get the message out there for kids like Nicholas, Roman, Corey, Joe, Nolan, Chloe, Nathan, Bradley, Destiny, Coleman, Calla, Austin, Brody, Trey, and many many more kids who need your support to get the message out there. RALLY 'ROUND THE GOLD RIBBON needs you. Now more than ever. I am just not myself at the moment, so I am not going to close like I usually do. Please PLEASE just pray for Nicholas, OUR SHINING STAR!!! Jody, Mike,Sheridan and Roman Fariello:(
|September 29, 2008
Hello to our family, friends and new friends! Nicholas, Our Shining Star, has an MRI at 11:00 this morning and then a Bone Scan this afternoon. PLEASE pray for this family for me. Also, I am copying a very POWERFUL letter from a fellow cancer mom and not just a "regular" cancer mom either...PLEASE READ...
September 28, 2008
Have you seen a gold ribbon? Do you know what it stands for? Have you heard that September is Childhood Cancer Awareness Month?
I am the mother of a child living with brain cancer, a diffuse intrinsic pontine glioma. I finished breast cancer treatment on July 10th and flew from Michigan to West Virginia that day for the funeral of another child...a beautiful fourteen year old girl who lost her battle with the same rare brain cancer.
Everywhere I look I see pink ribbons, I feel gratefulness...and I feel anguish. According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment “...98 percent of women with early-stage [breast] cancers survive at least five years….” Why is this true? Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters. Our children who are living withand dying fromcancer desperately need that same attention...and funding.
Helen Jonsen, Forbes.com senior editor and mother of a child who recently underwent treatment for osteosarcoma, stated in a September 12th article, “Cancer is the No. 1 disease killer of children in the U.S. ...We tend to talk about it in hushed tones instead of screaming for help. But scream we should.” The article goes on to say, “The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.”
September 13th was our nation's first Childhood Cancer Awareness Day. When I didn't see anything about it in the newsbut I did hear about National Talk Like a Pirate Day a couple days later, I made some calls to our local news stations. For some reason I can't get the words of one of the story editors out of my mind. “So...what's your event?” Later…”Pitch me a story.”
Let's see...ummmm...would the deaths of 2,300 children each year be newsworthy? What about the diagnosis of 46 children each and every school day? What about the fact that only 2/3 of children diagnosed with cancer will survive? We could move on to funding. Is it newsworthy that for every dollar spent on a patient with prostate cancer, less than 20 cents is spent on a child with cancer...or that a patient with breast cancer has triple the research resource allocated to her when compared to a child?
When I mentioned that Child Cancer Awareness Day--and month--are a national thing, I was told, 'We put local news first.' Okay...I can handle that. A local event...I have a list of them.
The shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.” We could always throw in the comic relief of the words, “My mom has a mass!” coming out of the mouth on that happy little face.
How about a mother leaving the Pediatric Intensive Care Unit late that night to go home because she knows she needs to get a good night's sleep before attending an Interdisciplinary Clinic early the next morning...where her own treatment plan will be recommended?
How about a local pastor, husband, and father being given the specifics of his son's grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife's diagnosis and prognosis from the Cancer Center at another hospital?
How about an 11-year-old boy and an 8-year-old girl being abruptly pulled out of the routine world of reading, writing, arithmetic, language, history and science as taught to them by Mom at home...and being thrown into a class on brain anatomy and abnormalities (specifically their little brother's) taught appropriately and compassionately by an MSU med school professor...who also happens to be their brother's new oncologist?
How about a six-year-old who finds himself no longer able to play the piano, the violin, or the cello because he has lost the strength on the left side of his body?
How about a mother waking up in her child's hospital room one morning, showering, and walking downstairs for her lumpectomy...while her husband takes over the duties of hospital parent and waits anxiously in his son's room for news of his wife's surgery?
Looking for a human interest story? Try the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church...only to watch in disbelief as her fun-loving, active six-year-old--determined not to have an accident--becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things...because he knows his mother is recovering from surgery and he is concerned for her well-being?
Not sensational enough? Let's fastforward to Saturday, November 24th, 2007...two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son's oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, then staring ahead...completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. Aside, the question parents never want to hear, though one that must be asked, “Given his prognosisdo you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, 'Do we know what is happening?' The answer is no. 'Then, yes, we want you to do everything you can for him.' She stands at the foot of the bed with one of her son's oncologists. Together, they watch the PICU team work...with purpose...like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room...that one little boy.... The eyes of those outside the room...every nurse, every resident, every doctor...are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable...on life support....
I have just highlighted the first month of our new life in the pediatric cancer world. I am aware of five precious children who died last weekwithin five daysas a result of just one type of rare cancerous brain tumor, the same as my son’s. Skyler...Adam...Mara...Brynne...and Lauren. They belonged to all of us. What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of a child belonging to someone in the media? Will it be your child?
Please, join the effort to raise childhood cancer awareness. Show your support by wearing a gold ribbon, and by making the issue an important topic of conversation. Distribute copies of this letter in your place of employment, in your place of worship, and in your community. Contact government officials, and express your concern.
A decade ago, we noticed a person wearing a pink ribbon on a t-shirt or lapel. It didn't take long for pink ribbons to raise breast cancer awareness in the public eye, and to mobilize our society to action. I hope that in 10 years gold ribbons will be as common as pink ribbons...and that the survival rates for pediatric cancers will be comparable to those for breast cancer. With your help, it will happen...one gold ribbon at a time.
With Hope for Our Children,
Breast Cancer Survivor & Mother of a Child who is Battling Brain Cancer
|September 28, 2008
Hello to our family, friends and new friends! We had a good weekend...Saturday night my niece Kady got married to her now husband Nick Martini. The wedding was beautiful. Kady looked beautiful and her dress was gorgeous. The whole wedding was perfect in every way. The reception hall, The Woodlands, was really nice. My brother Michael sang in the wedding and did such an amazing job singing. He had us in tears with the Ave maria (that was one of our Mom's favorite songs). We want to wish Kady and Nick every possible happiness that marriage can bring. Then today, we went to cousin Ian's 2 birthday party! I cannot believe he is 2 already. He is just adorable...he had icing from cupcakes, cake and cookies all over his face...you know he had a great time enjoying all his special treats:) He got lots of cool toys for his birthday too. We love you Ian! You are growing so fast! I hate starting out with great news and ending on sad news. I received an update on the carepages from a dear family that we have been following for quite some time now. Carepage name is NICHOLASDEFELICE spelled just like that in all caps. His mom Denise and I have talked on the phone about our Gold Ribbon campaign and I just sent her some Gold Ribons in the mail last week. Nicholas was taken to the er yesterday late and was complaining of a headache and vomiting along with it. With his NB history, he has been declared NED for a while now. Much longer than Roman. They took a CT of his head and discovered a lesion on the left side of the skull. The NB team will decide what to do tomorrow with Nicholas and they are awaiting CT results from the abdomin and chest as well. We have always referred to Nicholas as "OUR SHINING STAR" because he is one of VERY FEW kids that have been and remained NED that we follow. This has made my stomache hurt and my head spin with worry and fear for Nicholas and his parents Denise and Brian since last night when I found out. Please, when you pray, will you pray for Nicholas that this "spot" is not NB coming back again or God forbid a secondary cancer. Go to their carepage and let them know you are a Roman supporter. Their time of need is now for fear of all the unknowns for Nicholas. Denise, I know you read Roman Updates...please know my heart aches for you and the very place you are in right now with Nicholas is more than just scary, it's breath taking and gut wrenching and just plain horrific and then some. Please know we will pray and pray even more for "OUR SHINING STAR". And we wish him ALL THE NICK POWER HE NEEDS....GO NICK POWER!!!! I will update more when I find out about Nicholas and what the team will do. God, please keep Nicholas safe and in your hands. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. God bless all of you Roman supporters! Jody, Mike, Sheridan and Roman Fariello:(
|September 25, 2008
Hello to our family, friends and new friends! Since I last updated on Rescue Roman, Neuroblastoma has taken another beautiful child. Her name was Eliza S. I started following her around April or May. She was going to come here to Cincy for MIBG Therapy but the disease was too far gone, it spread so fast. Sweet Eliza, as I called her, earned her wings into heaven on September 23. That's 4 children with NB that have gone to heaven way too early. It's been a very rough 2 weeks in the carepage family world. That's 4 families who buried their very young children. I cannot even imagine my life without Roman or Sheridan. What those parents and families are feeling right now is just pure @!$%. Again, my heart aches for Eliza's Mom, for I know she will miss her baby girl more than life itself. Please, go their carepage ElizaS and leave them a message of support and tell them you are a Roman supporter. I have ordered another 20 rolls of Gold Ribbon...we have ALOT of ribbons to make:) That will be an estimated 14,000 more ribbons. Which is good because we intend to give ALOT out for the walk at Coney on OCT. 11. Our team is doing very well. We have many members and alot of people who can't walk with us but are sponsoring us with money. So, allow me to thank everyone for your support ahead of time. Roman is doing just fine. He has a runny nose due to some allergies, but he really is doing fine. We do not go back to see Doc Wagner until November for scan time all over again. Roman does have a hearing exam coming up on OCT. 1 at Cardinal Hill in Florence KY. This will give us the info we need regarding hearing aids and what our focus will be with speech therapy looking ahead. This weekend is a busy one for us. We have my niece Kady's wedding on Saturday night and on Sunday, our nephew Ian is having his 2nd birthday. So, party time for us both nights. Mom and Dad are coming over here Saturday so Mike and I can go the wedding alone. It's just easier so we don't have to worry about Roman's peanut allergy and feeding him something potentially deadly. And besides, Mike and I could use the time together just the 2 of us. So, that's about it for now. To all of my ribbon making helpers, keep in mind next Wed. night here at my house about 6:30. I will have the new ribbon too by then. We will be very busy ribbon making people:) I truly could not thank all of you enough for your help. Debra and I could not do all of this alone. Thanks everyone! God, please keep all of these families, who just lost their children the past 2 weeks to NB, safe in your hands. Give them the strength they will need forever. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. God bless all of you for going on this cancer journey with us. We are blessed by you! Jody, Mike, Sheridan and Roman Fariello:)
|September 22, 2008
Hello to our family, friends and new friends! We are home from our vacation. We had a great time away. Our trip that was a total disaster last year, was definitely made up to Sheridan and Roman this time around. From the pics I sent you, our chalet view was absolutely breath taking, and Sheridan loved dressing the goose in by the kitchen with all of the cute outfits that came with it. We went to Ripley's Aquarium, we rode rides, played in the arcade and just had fun:) Roman and Sheridan enjoyed themselves and Mike and I were happy seeing them happy:) We enjoyed spending time together and with our dear friends The Powells. We love you guys! Thanks for putting up with all of us and "living" with us for the weekend:) We enjoyed being away, but we are sure happy to be home too. Sheridan is doing homework now with Daddy and Roman is losing "steam" and winding down. We are all very tired. I will update more tomorrow. Enjoy all the pics! I will be sending more of them too. I took ALOT!!! God, thank you for keeping us safe on the road down and back home. God, thank you for keeping Roman safe and for giving our family this much needed time together. God, please keep blessing our Roman and all kids fighting for their lives and for all of the angels already in heaven way too soon. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|September 18, 2008
Hello to our family, friends and new friends! Yesterday, Neuroblastoma took another young life away. Chloe Parker. Chloe Parker's story scared me in a way that no other child has. She was diagnosed in Feb '07. She was in treatment at the same time Roman was. She was declared "NED" just like Roman. Right up until that point, Chloe showed no signs of disease. She completed taking all 6 cycles of Accutane in April this year. Then for her follow up scans after taking Accutane, they found a spot on her femor. This was in mid April. Chloe just died yesterday. That is only 5 months. This disease is just horrific. Oh how my heart aches for these families. And to think that we could, God forbid, BE one of these families. Simply put, there is so safe time for Roman at all. Please, if you can, go to their carepage ChloesJourney and leave them a message of support. That is why we NEED to bring awareness out in full force. That is why the Gold Ribbon message MUST get out there. With everyone's help, it will. Last night we made about 430 ribbons. I want to thank Shirley Jones, Erin Bowling and Marsha Benjamin for giving their time to help make ribbons last night. Anyone else out there wanting to help us, I am going to order more ribbon next week. That will be 20 more rolls that will need to be cut, and 14,00 more ribbons to be made. So, we will need ALOT of help to make them so we can pass them out at the walk at Coney on October 11. I also want to take this time to thank those of you who have sponsored us with money for the walk or by joining the team and walking with us. It is the Rally 'Round The Gold Ribbon team for all Childhood Cancers. The money we raise will go directly to the Hemotology/Oncology floor at Cincy Childrens. Mike and I and the kids along with our dear friends The Powells and their kids are leaving for Gatlinburg tomorrow morning. We are really looking forwad to getting away with the kids and making this trip up to both of them. We WILL have fun this time:) So, when we get back on Monday late afternoon sometime, I will update about our trip. This trip will mean more to Mike and I than any of you will ever know. Specially with Chloe earning her angel wings yesterday, we know that TIME is more precious than anything else in this world. Seeing Sheridan and Roman have fun and just being sister and brother together will mean the world to us. We thank you for your loving support for our son this past year and half. We thank you for your prayers for keeping Roman safe. To our carepage families who follow us, we thank you for keeping up with Roman even though at times your road is way more difficult at times. We cherish all of Roman's supporters. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven way too soon. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|September 14, 2008
Hello to our family, friends and new friends! Yesterday, for our special Childhood Cancer Awareness Day, Sheridan and Roman each had a GOLD balloon and let it go...for all the kids that are currently battling, NED, and newly diagnosed, and those who have already earned their wings into heaven way too soon. We watched the balloons for a bit and Sheridan asked "are we sending them to Grandma and Grandpa Davis up in heaven?" and I replied "absolutely we can send the balloons up to heaven for Grandma and Grandpa Davis". Sheridan then asked, "but how are they going to get hem?" and I replied "Grandma and Grandpa Davis will get them for sure because you and Roman sent them". Whew...those questions I am quite sure will become more numerous as she wants to learn more about her grandparents (my parents). I always tell Sheridan that she and Roman are SPECIAL because they have a set of grandparents with us here and up in heaven too.
I have read ALOT of my fellow carepage and caringbridge entries yesterday and all of them seemed to have the same theme...NO MEDIA ATTENTION ANYWHERE TO FOCUS ON NATIONAL CHILDHOOD CANCER AWARENESS DAY!!! I really think that is SAD!!! We focus on everything else...here on our local stations there was a blurb about "Barkfest" for dogs!!!!! And, even on one caprepage I follow, a mother who feels just like I do and countless others about the abundance of Pink out there...a PINK ribbon was across a plane from the nose of it to the tail...I could not believe it...she took a pic of it....her caption underneath was "this is what I want to see for our children". Oh how I am boiling inside...we can report on "BARKFEST" but not on our children!!!!!! What are we going to have to do to get the attention our kids deserve??? I know persistence is the key...and I have a TON of that:) I will NOT give up the push for our children. They need a VOICE. I know Debra Nickell cp:coreynickell feels the same way I do. And, I know there are MANY of our fellow cancer parents on carepages and caringbridge that feels the exact same way too! So, with determination of countless others trying to make a difference...it WILL happen. With support of perfect strangers at my Weight Watchers meeting, to the MOPS org. to Crossroads Preschool, to my neighborhood moms, to close friends, to family, to friends of family, to a waitress at the Cabana, to the Zoo and so on. We WILL get the message out there for our children. People WILL know what the GOLD RIBBON is for and know about CHILDHOOD CANCER AWARENESS in general...why...because of pure PERSISTENCE and not giving up...why....because of strangers wanting to help out in any way they can......why....because when you see the child with cancer you can't help but feel COMPELLED to help in any way......why......because I know many moms and dads who have lost their children, watched them die in their arms while taking thier last breath.......why..........because it is our RESPONSIBILTY as a country of adults who should be putting our children FIRST!!!!!!!!!!!!!!!!!! Thanks for letting me let it out again. If I only had PLATFORM! Love to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|September 13, 2008
Hello to our family, friends and new friends! It's National Childhood Cancer Awareness Day today!!! This is a day that Mike and I NEVER dreamed or imagined we would ever be made aware of. 46 sets of parents will get told today that "your child has CANCER". 46 sets of parents will be devastated, families tested in ways they never could imagine. Emotionaly, physically and financially. Siblings, will be tested in ways no parent will ever be prepared for. I have attached a document that I want ALL of you to read. It is by AJ's dad, who started the petition to get signatures for Childhood Cancer. http://www.thepetitionsite.com/1/CureChildhoodCancer
Go there, TODAY and sign the petition if you have not done so already. AJ's dad lost his son at the age of 14. He will no longer get the chance to toss a baseball to his son ever again. Go Sign the petition. Today is the day to do it. It's significant. I will leave you with this...PLEASE READ WHAT I HAVE SENT...YOU WILL FIND IT VERY INTERESTING!!! You will see with real numbers how severely CHILDHOOD CANCER is UNDERFUNDED. Research done by AJ's dad...wonder why that is???? God Bless all of you and thank you for your support for our son Roman. Today is a NEW DAY for us to reflect what has happened to him, to Sheridan and to our family over the past year and a half. Without your loving support for him, we would be lost. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And today of all days, let us not forget all of the families that have lost their children to Childhood Cancer. God bless! Jody, Mike, Sheridan and Roman Fariello:)
|September 12, 2008
Hello to our family, friends and new friends! Today, Debra, Jamie Landheer (Thank you Jamie) and I handed out over 450 Gold Ribbons to docs, nurses, maintenance workers, construction workers, admin personnel and of course families all over the cancer floor at Cincinnati Children's Hospital! The most IMPORTANT thing here is AWARENESS...not one of those 450 people knew that tomorrow was National Childhood Cancer Awareness Day, or that the Gold Ribbon was the symbol for Childhood Cancer...but guess what...THEY DO NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! No, the news media did not come to the hospital. I am bitter about it, but it will not BREAK MY SPIRIT or MY DRIVEN FORCE to fight for all children with Childhood Cancer. Not channel 5, 9,12 or 19!!! I guess their news ideas and my news ideas are NOT the same thing. We had a wonderful show of support from where it all began for Roman and for Corey today. We would have much rather been by the cafeteria where we would be EXPOSED to more people, but, we are thankful for them letting us do what we did today. So, if ANYONE has any news connections with anyone...PLEASE, send them our way:) I want to tell you about the mini cupcakes in the pics...Sheridan's preschool director from last year, Miss Suzanne, brought over mini cupcakes for Roman to try...they are egg free, peanut allergy free and believe it or not...they were FABULOUS!!!! Miss Suzanne's friend is starting an ALLERGY FREE home bakery! So, if anyone is interested in cupcakes let me know...I can send you her info. Miss Suzanne brings over these cupcakes last night to wish Debra and I luck for today...I look down at them and saw that she had her friend make tiny ribbons on each cupcake for our luanching! I of course, cried! Miss Suzanne, you are one in a million and we thank you for being so thoughtful! And, they were a HUGE hit with Roman as you can see from the pics. So, we thank you again Miss Suzanne!
We will be ordering another 20 Rolls of Gold Ribbon... we got a a very nice donation from Jamie Landheer and 5/3 bank! Jamie, you are so sweet and so amazing for wanting to go the distance for us with our Gold Ribbon Launching! You now have made it possible for us to get more ribbon and spread more awareness for children with cancer. Jamie is dear friends with a family we have been following for awile and they lost their precious Marissa about 3 months ago to Neuroblastoma. She wanted to help Debra and I in any way she could in memory and honor of sweet Marissa! Jamie, thank you and may God bless you for the work and energy you are putting into fighting Neuroblastoma and all childhood cancers. You are such an inspiration to others! We have alot of work to do...our walk on October 11 at Coney Island, we will be passing out Gold Ribbons to EVERYONE that day!!!!! So, I am going to be meeting a teacher at Sheridan's preschool on Monday who belongs to a MOPS group over here in Hebron and they want to help us make ribbons. I am going to be hosting a ton of ribbon making days here at the house. I will let all of you know when. The road we know is a long one, from even the media not giving us the coverage our children deserve. I am going to be sending all of you some COLD HARD FACTS later on tonight or maybe even tomorrow since it is National Childhood Cancer Awareness Day. The general public MUST be informed of the funding for Childhood Cancer, or should I say LACK THERE OF!!! Since tomorrow is National Childhood Cancer Awareness Day, the balloons you saw at our launching have a double purpose...to be used to day for the launching and tomorrow, we will be giving one balloon to Sheridan and one balloon to Roman to "let go" up to heaven for ALL kids who have earned their wings into heaven, for all kids who are still battling, and for all the new 46 kids that will get diagnosed tomorrow! I will try to get pics of the two of them letting their balloons go up in heaven. Now, lets see, what can you do tomrrow...you can let a GOLD balloon go in honor of Roman...you could send me emails requestion GOLD RIBBONS since Roman has touched your lives, you can help us with our RALLY 'ROUND THE GOLD RIBBON campaign by spreading the much needed awareness for all warriors and angels, they deserve it!!! Until later tonight or tomrrow! God Bless! God, please keep blessing us with people like Miss Suzanne, Jamie Landheer, and countless others who want to help us make a difference for our children. God, please keep blessing our Roman and all kids fighting for their lives each and every single day. And for all of the angels who have already earned their wings into heaven way too soon. Jody, Mike, Sheridan and Roman Fariello:)
|September 9, 2008
Hello to our family, friends and new friends! Today, Roman went outside with his Sissy to play after Miss Tina left from his speech therapy session. The next thing I knew he came in crying and screaming in pain...I of course immediately looked for blood and asked Sheridan what happened. She didn't know. After Roman sat on my lap and I took inventory of seeing no blood anywhere, He finaly got out while crying a "bumble bee". And he showed me his hand. He got stung in between his thumb and his index finger in that crease of skin. It was red and very swollen. I gave him 2 tylenol, put on some sting relief and some ice on his hand. He is now napping as you see in both pics I sent to all of you. He will be fine. I actually found myself feeling like a "normal mommy" trying to console her son from a bee sting and not from chemo, or blood draws, or anything cancer related. I welcome ALL of those "normal" moments with open arms. Roman's Speech Therapy session went very well. Miss Tina does an amazing job with Roman. She has been working on some sounds that Roman might be having some difficulty hearing, like the ch sound, the n sound. She had 2 pics in front of Roman on the table. A pic of a bow and a pic of a bone. Both sounding very similar, she stood behind Roman and asked him to "give mommy the bone" and Roman passed me the bow. She then asked him "give mommy the bow" and Roman passed me the bone. So, clearly, he is having trouble hearing that particular sound. There may be more sounds, but at least we know this is a sound he cannot clearly hear. Roman will be going to Cardinal Hill in Florence on Oct. 1 for a hearing test with them. Nothing against Childrens, but I feel a different perspective, different tester and different place this time will be better. So, we are not completely "out of the woods" with the hearing issue so to speak and we will learn more when we actually do the hearing test. There are only a few sounds in that soft upper frequency that Roman is having trouble with. I am not sure if that is enough to warrant hearing aids or not. Or if he will only need one hearing aid for his right ear since that is the ear that seems to be the one that suffered a bit of loss. We will certainly know more on October 1st. Miss Tina and I also talked about First Steps ending on Roman's 3rd birthday. Miss Tina has agreed to stay on with us as Roman's speech therapist for many reasons. One is Roman adores her. I will not make him start all over with getting to know another person and get to feel comfy like he does with Miss Tina. For another, Miss Tina has agreed to come to our house still to see Roman. That in itself makes me feel better knowing that I do not have to take him to an office somewhere. And with all of the germs out there with flu season coming etc. it will be better this way for Roman. We have decided to take care of Miss Tina with the funds raised by benefits for Roman. So, Mike and I thank you for allowing this to happen for our son. Without your loving support for him this past year and a half, we could not be doing what we are going to do with Miss Tina. It is very crucial that Roman gets what he needs now because it will only help him when he reaches school. And, if Roman needs a hearing aid and/or aids, you will help take care of those as well. So, from our hearts to yours, we truly thank you for your support for Roman.
The Gold Ribbon campaign is coming along very well. I wanted this update to be about Roman's progress with therapy and to fill all of you in on things. Will update soon again! God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who already earned their wings into heaven way too soon. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|September 7, 2008
Hello to our family, friends and new friends! Today, RALLY 'ROUND THE GOLD RIBBON moved full speed ahead!!! We had, including Mike and I and Debra, 11 people making GOLD RIBBONS. We made, are you ready for this...over 2000 GOLD RIBBONS!!! I cannot thank everyone enough for buying safety pins, scissors and donating the best gift of all right now for us, their time. Aunt Jenn, Mom, Debbie and David Powell, Rachel Re, Stacey Murphy, Kathleen Bertline and Jamie Landheer. Debra and I can not possibly do all of this alone. It is with a great shared view of the lack of awareness for Childhood Cancer that we feel God is placing people right in front of us to help us get the message out there. For that, Debra and I cannot thank you enough. For those of you who would still like to help us with our campaign, please just email me. I am going to try to do something here on Wednesday night to work on some more. So, if you want to dive right in and help, you are needed:)
Now, all of you know that on this Friday, Debra and I will be launching our RALLY 'ROUND THE GOLD RIBBON campaign at Cincinnati Children's Hospital on the 5th floor. We are very excited:) The media will be there for this launching, I am quite sure. At least we hope they are. Anyway, we are going to be passing out GOLD RIBBONS to the ENTIRE fifth floor. That includes all nurses, docs, adminsitrative staff, clinic, day hospital, hem/onc side and BMT (transplant) side. And, specially to all of our caprepage friends who are there, and families on both sides. It feels great for Debra and I because we have the support of the hospital. THAT means alot to us:) I am going to heopefully get alot of pics too. After the launching, our mission will be far from over...we are working on a website and working on getting non profit status for our "Mommy Mission":) So, I wanted to bring all of you up to speed. I hope all of you got to watch the Stand Up 2 Cancer special the other night. We did. While I feel at least something happened for a great cause for everyone to unite and fight for cancer in general...I do NOT feel that Childhood Cancer was portrayed nearly enough...I would like to see a "mini series" so to speak dedicated to ONLY Children with Cancer. I am going to be blunt right now...they "portrayed" 3 children, little Drew with NB, Pierce who has Medullablastoma and a pic of Julian Avery who lost his battle in Jan. of this year to Medullabalstoma as actor Forest Whitaker read his Mommy's words as she watched her son take his last breath. These children, all warriors and angels, deserve so much more than they are getting. A "snip-it" of each child is NOT enough. Parents like them, the Nickells and Mike and I want to change so much out there for our children with cancer. That is why this GOLD RIBBON campaign means the world to us. We are going to do WHATEVER we need to do to spread the much needed awareness for ALL children with cancer.
Thanks to everyone who is helping, has helped and will help in the future to get this going. God, thank you for putting amazing "strangers" in our lives. God please keep blessing our Roman and all kids fighting for their lives each and every single day. And for all of the angels who have already earned their wings into heaven way too soon. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|September 4, 2008
Hello to our family, friends and new friends! I am quite sure by now all of you have seen "snip it" commercials advertising the Stand Up 2 Cancer special that will air tomorrow night (Friday) at 8:00pm Eastern Time. It is going to be broadcast across all of the major TV networks. What you don't know is this...Mimi Avery and her husband Ken will be there sitting in the live audience inside the Kodak Theater. They lost their precious son Julian on Jan. 19 of this year. Julian left behind 3 brothers and a mom and dad who miss him more than words can describe. Julian had a cancer called Medullablastoma. I am telling you this because Mimi and her husband both are "driving forces" in the push for Childhood Cancer Funding and Awareness. They will be sitting in the live audience as a famous actor or actress reads Mimi's exact words she wrote in Julian's carepage (JuliansWorld) when he died. Mimi is such an amazing Mom and such an inspiration to Debra Nickell and I both. I want everyone to know that Childhood Cancer will be "hit" on during the program. I say HIT because only a very small time is alotted for our children. If I had my way, and I am quite certain I am not alone when I say this..we would have an hour long special dedicated to ONLY children, even longer than 1 hour. So, while you are watching the special tomorrow night, you now have a "personal" reason to tune in because of our dear carepage friends, the Avery Family. Please understand we, the cancer parents, will take any amount of time given to us to get the word out that Cancer happens to CHILDREN too, not just adults. There is ALOT of work to be done to change that across our country. That is why it is so important to support the GOLD RIBBON not just in the month of September for Childhood Cancer Awareness Month, but every month of every year that follows. That is why Debra Nickell and I are working so hard on our RALLY 'ROUND THE GOLD RIBBON CAMPAIGN. We have to start somewhere and start putting the children of our country FIRST!!! These kids deserve so much better than they are getting. More awareness, more funding, more understanding of what CANCER really means when it attacks children. Cancer in kids is different than in adults. Their bodies are still growing, their tiny bodies cannot handle chemo like adult bodies can. The long term effects of chemo drugs and radiation in children is sometimes worse than the original diagnosis. What is the lesser of both evils... HUMMMMM????... Some of them have not even had the chance to be "normal" and out of a hospital setting. I am not "knocking" the 1 hour special, I feel it is at least a start in doing SOMETHING. It's just that when are WE, as adults, going to realize that our children cannot speak for themselves like we can. Childhood Cancer so desperately needs a VOICE. A platform. And well, Debra and I are more than willing to be that VOICE for ALL children with cancer!!!
While you are watching the 1 hour special tomorrow night, think about the Avery family, and all the families that I mentioned on RescueRoman.org over the past year and half...Think about the number 46!!! It's the number of how many kids each and every day get diagnosed with a Childhood Cancer...these families lost their children who are are already angels in heaven...These families had no idea that they would be one of those 46 whose child would get a Childhood Cancer and lose their child because of a lack of research, funding and awareness. Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello
|September 2, 2008
Hello to our family, friends and new friends! Well, this is going to be a mixed bag if info. Some good news and some sad news. Allow me to let you in on the sad news first...Neuroblastoma has taken the lives of 3 very young children over the holiday weekend. 2 Children I have just recently begun to follow. It is ever ringing so very loudly in my heart and my ears for them, that it is SEPTEMBER...CHLDHOOD CANCER AWARENESS MONTH. How many more children have to die before we do more than what we are doing??? My heart is very heavy and it hurts so bad for these families. Please, say a silent prayer for the 3 angels and their families, who just earned their wings into heaven way too soon. They don't get to hold their child anymore, they don't get to give them a hug and a kiss before bed and thruout the day, they don't get to hear those amazing words "mommy/daddy I love you". Never will they hear those words again come from their precious children. I wish you see and feel how heavy my heart is right now. That's 3 kids gone, taken from their families. NB is a beast, it is just pure EVIL!!!! It must be stopped.
I am still waiting on our ribbon to arrive. Believe me, as soon as it arrives, I will let everyone know. If it comes before the weekend, I am looking to have people come to our house on Sunday afternoon sometime to make ribbons. The need for GOLD RIBBONS is ever so growing. Debra Nickell got an email from the vice president/director of merchant support at 5/3 corporate offices downtown, who has a close connection with another family who lost their daughter 3 months ago. She has opened the door to her employees that day to wear jeans and their favorite sports team attire to KICK CHILDHOOD CANCER"S BEHIND and everyone is donating $5.00 that day to wear jeans. Now the money they raise is going to another NB website, but, she has asked Debra if we can get her some Gold Ribbons to wear and she would make a donation to us. See, it is spreading the awareness we need for ALL children with cancer. I am going to open the door to ALL employers out there who follow Roman and our story...if you are in the position of power and would like to challenge your own employees to make a difference and raise awareness, please send me an email...I am quite sure we can get Gold Ribbons to you in exchange for funds and/or services that you provide to help us with our campaign. The funds raised will go directly into funding our Gold Ribbon campaign and buying the ribbon and safety pins needed. Debra and I hope this takes off like wildfire and spreads thruout the country. I am going to repeat it again...THERE ARE NO GOLD RIBBONS OUT THRERE ANYWHERE TO RAISE MUCH NEEDED AWARENESS FOR ALL CHILDREN WITH CHILDHOOD CANCER!!! !!! !!! WE...DEBRA AND I, ARE GOING TO GO THE DISTANCE AND CHANGE THAT FOR ALL THE ANGELS, WARRIORS and for ALL 46 KIDS THAT GET DIAGNOSED EVERYDAY IN THE FUTURE!!! Believe me when I tell you this...we are not just talking about right here in Cincy, Northern Kentucky and Southeastern Indiana...we are talking across the UNITED STATES!!! Whatever it takes to make this right for our children. OK, now that I got on my soapbox...send me an email, if you want Gold Ribbons, I will work with you. See, once I get started I cannot stop:) It is a driven force inside of me...I cannot explain it. Debra feels the same way I do too. Ok, on Sunday we took the kids to Big Boy for dinner and to the airport to wact the planes come in and take off. Big Boy gave the kids fortune cookies and with Roman's peanut allergy, Mike and I decided it was too risky for him to eat it so I out them in my purse. Yesterday, I went to the grocery store and pulled them out to eat them. You will NEVER believe what the fortunes said inside...the first cookie I opened said this..."The world is always ready to receive talent with open arms" and I thought...mmmmmmm, look out world, here we come! The second cookie I opened said this (which is even better)...You will have GOLD pieces by the bushel"...Now I am sure many of you do not believe in this sort of thing, but you gotta admit since we are working on a GOLD RIBBON campaign and needing tons of "BUSHELS" of them, that it was very amazing for me to read that. So, there's my "WOW" moment to share with all of you.
I also have a HUGE HUGE HUGE thank you to send to our very own photographer Mikki Schaffner. Mikki has completed the Bowling Benefit Pics she took that night of everyone. They are mostly of all the kids that were there having fun. There is the most amazing pic she took of Roman and Corey hugging each other. That is the photo that was sent to all the local news stations to tell our story and raise awareness this month and beyond September. Mikki, being the most kind, most caring and most giving person that I have met, has donated all of the money she would make on pics that you, our supporters buy from her, to Roman. We love you Mikki! And I know what I am about to tell you Mikki would not mind...whatever money we make on the bowling pics that you purchase from Mikki's site, that money will go directly into our Gold Ribbon campaign fund. So, Roman Supporters...you get to buy amazing photos by Mikki, and in turn help Debra and I with our campaign. Here is the link to look at the Bowling Benefit Pics http://mikkischaffner.smugmug.com/gallery/5820090_GqyGB#360793783_aHF4G
. Again, Mikki we love you and we hope your photo of Roman and Corey gets plastered ALL over our local media and beyond. Your work is absolutely the work of an amazing artist!!! God Bless you for what you have done and continue to do for our family:)
That's it for now. Please remember those families who lost their children this past holiday weekend.
God, Please keep blessing our Roman and all kids fighting for their lives each and everyday. And for all of the angels who have already earned their wings into heaven way too soon. Love and thanks to all of you who follow Roman and our family! We cannot have come this far without your loving support! Jody, Mike, Sheridan and Roman Fariello:)
|August 30, 2008
Hello to our family, friends and new friends!!! WOW!!!!!!!!!! That is all I can say!!!!! Today, we had some family and friends come over to start making our gold ribbons for RALLY 'ROUND THE GOLD RIBBON!!!!!!!! It was so awesome to see this campaign come to life right in front of our eyes. A HUGE HUGE THANK YOU to those of you who bought ribbon, safety pins and who came over today to help us out. Debra and I really appreciate what you have done. We cannot do all of this alone. Many of you are still wanting to help...well, we ordered online today enough gold ribbon to make about 14,000 GOLD RIBBONS...yes, that's what I said...14,000!!! All of you who live in our area and would like to help us make Gold Ribbons, your chance will come because we will have ALOT of ribbon to make Gold Ribbons for a number of upcoming events that Debra and I are involved in. The first event is coming real soon for us. National Childhood Cancer Awareness Day is Sat. September 13. But, on Friday the 12th, the day before, Debra and I will be at Childrens Hospital on the 5th floor passing out our Gold Ribbons and launching our campaign called RALLY 'ROUND THE GOLD RIBBON. It is so very exciting for all of us involved. We are hoping the local news stations will be there to capture the launching and interview Debra and I about our God Given DRIVING FORCE behind what we believe in and what so desperately needs changed in our country today for Childhood Cancer Awareness. I am ready for this....I have never been more ready to tackle anything in my entire life like this ever!!! And I know Debra feels the same way I do. And we know so many many cancer parents here and all over our country who feel the same way. As soon as I get the gold ribbon that we ordered, I will ask people who can help to come to my house and start making ribbons:) From the pics I took...we made over 750 Gold Ribbons out of ribbon that some of our family and friends bought at Walmart for us and safety pins too. We used every single roll that we had here. Thanks again everyone! The other pic is of Debra Nickell and I holding the ribbons we made today. And the last pic is of Roman with toothpaste in his hair...it's amazing what kind of things happen in the bathroom when I'm not around:) So, I have plenty more to share but, it is getting late and I will leave you with this until my next update...everyone keep October 11 open, I will explain more next update. God, thank you for allowing us to launch such a huge campaign. God, please keep sending in the "miracles" that come into our lives daily. God, thank you for showering us with so many great people who are willing to help with anything and everything we ask of them. God, please keep blessing our Roman, Corey and all kids fighting for their lives each and every single day, we know so many kids and families who are affected by Childhood Cancer. And, for all of the angels who have already earned their wings into heaven way too soon. Love to all of you and thanks again! Enjoy the holiday weekend everyone! Jody, Mike, Sheridan and Roman Fariello:)
|August 25, 2008
Hello to our family, friends and new friends! The pics I sent to you are of just Roman and Sheridan standing at the bus stop and and then the both of them just being silly plain cute! And, then the other pic is of Sheridan, Roman and Corey Nickell. Debra and Corey came over last week to for a visit and for us to get the pics made we need to send out to all the news stations. Which brings me to my update today. I have been at it most of the day today trying to get free gold ribbon...you would think I am asking for an arm and a leg!!! I have tried many online companies and distributors and got some answers back...but not helpful answers and of course I get a BIG NO:( I am not giving up though. I did get in contact with a lady at Cincy Childrens Hospital and I got her working on a few things for us hopefully too. I am awaiting a call back from the marketing lady at Childrens and will get her on board soon too to help us with our RALLY 'ROUND THE GOLD RIBBON campaign with the media. My only last resort would be to have all of you...Roman and Corey supporters go out and buy a spool of gold ribbon and a package of small safety pins. I did not want to have to ask my own people to do more and spend more, but I may not have any other choice. I have emails all over,and at Walmart too. It is so nerve wracking and frustrating to get turned down for help with this. This campaign means the WORLD to Debra and I and all the other cancer families as well. I will keep all of you posted on where things stand. If you would however like to help buy purchasing gold ribbon, NOT YELLOW, I would be more than willing to accept your donation. Just send me an email. Debra and I are NOT going to let money stand in the way of getting our message across. We are bound and determined to get what we need. There is that old saying my Mom used to tell me "the Lord will provide". And, I do believe HE will. Also, Corey Nickell has his Cat Scan in the morning. Pleas pray for him to remain NED just like Roman. We love you Corey! God, please keep Corey safe in your hands for tomorrow's scan. God, please help send us GOLD RIBBON somehow so we can spread much needed awareness for all kids with cancer. God, please keep blessing our Roman and all kids fighting for their lives each and everyday. And, for the angels who have already earned their wings into heaven. Love to all of you and Thank You for your support. Jody, Mike, Sheridan and Roman Fariello:)
|August 22, 2008
Hello to our family, friends and new friends! Well, Sheridan has completed her very first week of school! She has done so well and we are proud of her. They started the behavior cards this week. A Green color card is great and that's what Sheridan has been for the past 2 days since this started. She says "Mom, I'm gonna stay green all the time" and I told her that we hope she does. We know she will:) She still misses her preschool teachers very much at Crossroads and her girlfriends too. Mostly she misses playing outside and having a snack! Roman and I have enjoyed our time together. He is so laid back, opposite of Sheridan. She is such high energy. Roman is lost without having his Sissy here with him. But he really does enjoy taking her to school and picking her up. She will start taking the bus to school hopefully on Monday. We will be picking her up though everyday. I was not thrilled knowing she would be on the bus with a bunch of older kids. So, going to school on the bus is only with kindergarteners and no other kids. Really nothing much going on with Roman's health (Thank you God)...he is a joy and we are so happy to be just watching him play and be NORMAL. He is doing what he is suppose to be doing...being an almost 3 year old little boy. I, on the other hand, have been very busy working on spreading much needed awareness for Childhood Cancer Awareness month, the month of September. Debra Nickell and I are about to launch what we hope is going to be very HUGE and bring much needed attention to Childhood Cancer in our area as well as all over. We are working on getting a domain name for a website. We are also hopefully looking into getting non profit status for our cause. We are going to be sending letters to ALL the local news stations like, channel 5, 9, 12, Fox 19, 64, Wcet/PBS. Also, to a few radio stations that we felt would be interested in helping our cause. We have named our DRIVEN FORCE...it is......RALLY 'ROUND THE GOLD RIBBON!!! And, we hope and pray that everyone does rally round the gold ribbon. There are NO gold ribbons to be found ANYWHERE in our tri-state area. No Ribbons that are FREE to just hand out and spread awareness. That's what Debra and I want changed. We want EVERYONE who sees a GOLD RIBBON to know what it is stands for, what it means. If you wear one and someone asks what is that for, you can do your part and spread the awareness that is so desperately needed for Childhood Cancer. We also have a call into an administrative person at Childrens Hospital who we hope can help us launch this off somehow. It's so exciting to know that Debra and I have this DRIVEN FORCE in us to make change. And, if any 2 Cancer Moms can make a change...it is Debra Nickell and Jody Fariello. However, we still need your help. We need to make contacts with ANYONE who can get a hold of alot of free GOLD RIBBON for us and small safety pins. Time is running out for us quickly. If you can and know of someone at one of the major retailers, or even online somewhere, please let me know. Money should not and will not stand in the way of what we want to accomplish, not just for Roman and Corey but for ALL CANCER WARRIORS and ANGELS. Remember, if you would like to help us in any way, please send any ideas or contact people to my email address or to Info@rescueRoman.org God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. God, please continue to give Debra and I that DRIVEN FORCE we need to help get the message out. Please have a safe and fun weekend everyone! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|August 18, 2008
Hello to our family, friends and new friends! Well...today...our Sheridan Bug went to kindergarten for the first time! I can't believe it that she's starting school already! Roman and I walked her in, she hung her backpack up and sat right down and started playing with Playdoh, waiting on the other kids to arrive on the bus. We gave her a hug and kiss goodbye and she went right back to playing Playdoh. And so another great chapter in our life is beginning with Sheridan starting school. It is very exciting! And no everyone...I did NOT cry. I guess I am so tired of all the OTHER crying we do with Roman, that I wanted to to just truly enjoy a very NORMAL moment. I know all of our Roman followers can appreciate the NORMAL moments we have. So, Roman and I are hanging out together and we will be having some mother son bonding time together every day that Sheridan is at school. I will so enjoy our time together.
I also wanted to share with you my dear friend and fellow NB cancer mom, Debra Nickell's beautiful writing she did last week. We both "vented" and Mike called my venting a "manifesto". Debra's is not as WINDY as mine, but I can assure you that you will feel what she wrote in your hearts. She wrote about what it feels like right now where we are, where are boys are with being NED and being scared out of our minds with a RELAPSE. If you would like to send Debra a reply or response, I can forward it to her, just send it to me. Enjoy the writing titled "THUNDERSTORMS" by Debra Nickell...
There is a storm coming at you. The warnings are out. Prediction is 75% chance of heavy rain, damaging winds, large hail, and a threat of tornados. What do you do? Do you carry your umbrella? Do you park your car in the garage? Do you secure loose items? OR Do you rely on the 25% chance that GOD willing the storm will die out? Your car already has scratches and dents from a previous storm. Your hair is a frizzy mess when it gets wet. You have on a nice outfit today. You have an old tree in your front yard, will it be able to withstand the storm. Do you risk leaving everything out there in the threat of the storm? There is a 25% chance that everything will be FINE. Why worry about it? Why take precautions? There’s no guarantee that you or your possessions will be damaged further. There’s also no guarantee that your world won’t be destroyed in an instant.
This is my life. How do I live my life as if everything is FINE! There’s a 25% chance that Corey won’t relapse. There’s a 25% chance that he will live a full and healthy life. But what if the storm hits us again. There is a 75% chance that it WILL! He is already scarred physically and emotionally. Our family is scarred. Our spirits have been lifted with the second chance at life but the storm is coming. Will it reach us? Will it be worse than the last storm? The prediction is the next storm will come back with a vengeance and won’t stop until it has destroyed everything. Is everything FINE! NO it is not. This storm is not over. Corey has been wounded several times but he did survive the first big storm. Will he survive the next one? The storm is coming. There is a 75% chance that it will hit hard and destroy everything! Help us take cover so it doesn’t hurt us again! How do we live with this fear and threat? Why doesn’t the rest of the world get it? Why can’t they see this storm looming over us? When will it go away? Why does it have to stay there for the rest of Corey’s life? We don’t know how long he will live? We don’t know if he will grow up to be an adult and have a career and a wife. We know that he won’t be able to have children because his battle has left him sterile. He will always need hearing aids and struggle to be “normal” like everyone else because he has permanent hearing loss. He still has so many storms to take cover against just to live. Why can’t everybody see that this storm is NEVER going to be over? HELP US! We are fighting so hard and we just want the storm to be over. We want the storm to go away. Please GOD make this storm dwindle into a soft rain shower. NO it can’t go away, there is a 75% chance that it will destroy us! A 25% chance that it will go away is not enough. We need better odds. We need a secure place to take cover. How do I protect Corey from this storm? There is no cover. There is no safe haven. There is only hope and faith. Live your life on that alone. You know we do have a 25% chance that the storm will miss us!
Debra, we love you!
God, please keep blessing our Roman and Corey from the THUNDERSTORMS. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|August 16, 2008
Hello to our family, friends and new friends! WOW!!!! Last night was so much FUN for our family...it felt so great to see some old friends and meet some new friends too. And of course our families from both sides were there to support us and for that we are very fortunate and blessed. Roman and Sheridan had a blast bowling and playing games and running around with the other kids. It was so nice to see both of our kids acting and being "normal" for a change. The night brought with it so much love and understanding for Roman and our cancer journey. I met some really great Roman supporters, many of whom told me numerous times that I should write a book. So, if anyone has any kind of "in" with getting the ball going for me, I am open to any ideas of where and how to start. I would LOVE to write a book. Believe it or not, it is on my TO DO list, like raising much needed awareness for Childhood Cancer. SO, if any ideas on how to help me, please email me:) One of the most enjoyable times of the whole night was seeing Roman and Corey Nickell bowl together and have fun together. Everyone knows how we feel about Debra, Jim and Corey Nickell. We are 2 seperate families combined into one because of our sons' cancer journeys. Mikki our photographer took some amazing pics of both boys that we will share real soon with all of you. We love you Debra, Jim and Corey!!! People were so pleased to see our CANCER WARRIOR being a typical almost 3 year old little boy finally having some much deserved fun time. Sheridan too! The week we had was needless to say just a bit exhaustsing and overwhelming. But, last night we had fun and got to relax. I wanted to let all of you know that your support for Roman and our family touches our hearts in a way that words sometimes just don't express. Your loving support last night raised over $2200.00 for Roman's medical expenses and copays and deductibles. You will never know how much your support helps us with his bills. We have a 3 drawer filing system of bills and "explaination of benefits " and now a speech therapy pile too. We also have a hearing exam coming up in the next 2 months to make sure Roman is doing ok without hearing aids and/or if he will need them, your financial support will help pay for them. They are very expensive. Anywhere from $2000.00 to $4000.00 dollars. Insurance doesn't cover all or if any of the hearing aids. I just wanted you to know that your financial support comes in very handy every month for us. We are truly blessed by all of you. I have some THANK YOU's to send out...............................................................................My best friend Anne and my sister in law Jenn...you both are amazing people and worked overtime planning this benefit for Roman. As always, everything went very well because of the both of you. Mike and I love you both for your hard work and such dedication to our family into helping Roman. I am now going to list the names who volunteered to help work the benefit...Mom and Dad Kindt, Marge Nastold, Sis and Kari Thomas, Miss Tina (Roman's speech therapist) and her family, Marsha and Dave Benjamin, Debbie Powell and Mom Niehaus, Rachel Re, Anne's sisters Mary and Sarah...without all of you volunteering your time, last night would not have been a success. For that we thank you from our hearts. The next group of names are people who donated items etc...Marsha Benjamin, Rob Schaffer, KOI (Spring Grove office) and Carolyn Frank, Derney and Duppy, Debra Nickell, Melissa Melville, Kristy and Steve Cox, Perfetti Van Melle, Julie Riley, Randy Wolf and 1530 HOMER, Barb Wolf, Aunt Rosie and Paul Cupito, Ron and Linda Brock, Kelly and Tom Webster, Kim Meucci, Julie Good, Sue Shields, Aunt Jenn, Anne Allen, Sue and Tom Branigan, and to DelFair Lanes. I have 2 very special THANK YOU's...Carey Digital for making such a wonderful and amazing banner for us...all of you are so special to us. And to the most amazing photographer that ever walked...Mikki Schaffner, we love you, adore you and you are FAMILY to us. The personal time you gave up for Roman and our family last night, taking the most perfect pics and catching the most beautiful moments for us all for FREE, is nothing short of admirable. Your work is that of a true artist Mikki, we know you are the VERY best there is. We truly thank you and hold you close in our hearts always. I want to take this time to thank anyone who I possibly could have missed. Please know it was not missed in our hearts.
So, a look in what will be going on here real soon...Sheridan starts kindergarten on Monday 18th. I still can't believe that our Sheridan Bug is going to start school!!! Yes of course I will be taking pics. And, Roman will have a clinic visit probably not for a couple of weeks so we will be enjoying a much needed break from the hospital. And, I want people to start thinking about ideas of how to spread Childhood Cancer Awareness...I, along with Debra Nickell want to start something together to get the word out. September is Childhood Cancer Awareness month...that only leaves us a few weeks. I personally want to paint the Greater Cincinnati/Northern Kentucky area and beyond with Gold Ribbons. Every school, church, store, restaurant, gas station and beyond will know what a GOLD RIBBON means and stands for. That is my hope, my wish, my desire and my inner most driven force to spread the word and do what I can. But, I cannot do it alone. So, again, if anyone has any ideas, please email me. I guess that is it for now. Remember..............Think GOLD RIBBONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven. Love to all of you and many thanks! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|August 14, 2008
Hello to our family, friends and new friends! THANK YOU GOD for KEEPING ROMAN ...NED!!! We can all sigh a HUGE relief now because Mike and I just got a call from our coordinator Polly (we love you Polly)... Dr. Wagner looked everything over and EVERYTHING came back NED!!! That is Bone Marrow Biopsy, Cat Scan of Chest, Abdomen and Pelvis and MIBG Scan. All of them came back with NO EVIDENCE of DISEASE!!!!! As you can imagine Mike and I are breathing a bit easier now and our white knuckles are not so white anymore. It is because of all of you that Roman is NED. I truly believe that prayers for our son have kept him safe. Roman has sooooooooooo many amazing people behind him pulling for him. We as a family feel so blessed by all of your support and prayers. It has been a very long hard week on all of us with emotions running sky high. Most of our carepage families can relate with the rollercoaster ride we all ride on for scan time. To our other carepage and caringbridge familes, we are so thankful for all of your support knowing that alot of you have to deal with what we are feeling today and what he have felt this week. We truly thank you for your support, it means so much to us. Now, we can relax and have FUN, FUN, FUN tomorrow night for the 2nd Annual Rescue Roman Bowling Benefit. We have the info on Roman's website at RescueRoman.org if you need more info. It will be such a great time and Mike and I are so looking forward to meeting all of our new supporters and seeing alot of our family and friends...but most of all we are excited to see Roman bowl for the very first time in his young life! So, no pre-sold tickets needed, they will be sold at the door. So grab your family and friends and c'mon out for some fun with us tomorrow night. I also have one special prayer request today for my niece Kathleen 13, (Coleen's daughter)...she had eye surgery this morning at our Cincy Childrens Hospital. Please pray for a complete recovery for her eye. This is Kathleen's second eye surgery...she had one when she was 5 years old. It worked for a while but then her eye muscles went back to doing what they were not supposed to be doing. So, this second eye surgery is to have it corrected again. Kathleen we love you and know that God is keeping you safe right now for your surgery. I hope to see ALL of you there tomorrow night who can make it. Until tomorrow night...
God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. Love to all of you and thank you for the prayers this week, they helped!!! Jody, Mike, Sheridan and Roman Fariello:)
|August 13, 2008
Hello to our family, friends and new friends! Well, it's been a very LOOOOOOOOONG 2 days. We just got a call from radiology...we do NOT have to report for the 3rd day for MIBG scan. That is music to our ears just because Roman and our family, need a mush deserved break from the hospital. We do NOT have MIBG scan results just yet. We should get some news tomorrow sometime. So, we WAIT...
But, this morning Roman was a trooper as always and handled getting another IV in the same hand without any fear, or tears. Even the "sleepy doc" was commenting that he'd never witnessed a child having an IV put in sit that still and not without tears or crying or kicking or screaming". He was shocked with Roman. And our favorite RN in radiology (Char) even said "Roman you are going to spoil us". So, he did just awesome and still everyday continues to amaze Mike and I with EVERYTHING he has gone thru and continues to go thru....all the while SMILING! We are so proud of you Roman Michael! And, his sissy, has of course known that this week has been kind of crazy for us. She knows that we have had to go to the hospital and leave her here with Derney. It amazes me that Sheridan does not have to actually tell us how she feels with all of this craziness during scan week here at our house...she showed us last night by coming in our room and sleeping right on the floor next to Mike and I. THAT speaks louder than any words can ever say. Sheridan, we love you honey and we know you do not truly know what is going on here right now, but know you are such a great big sis to Buddy and Mommy and Daddy love you more than words. Things will hopefully settle down here after getting the results tomorrow. Then, we can breathe again!!! Please, pray for results of being NED!!! NED!!! NED!!! I also wanted to remind all of you about the 2nd Annual Rescue Roman Bowling Benefit at Del-Fair Lanes this Friday night, from 7:00 til 11:00. Cost is $15.00 and kids 4 and under are $5.00, that includes your shoes for bowling. We will be having a corn hole toss for the younger kids with prizes to win and grab bags filled with fun stuff for the younger kids for $1.00. Also be having 2 different raffles, door prizes and pictures from our amazing photographer Mikki Schaffner. So, spread the word and c'mon out to see Roman bowl for the first time ever! Mike and I look forward to meeting alot of you new Roman supporters. It will be a fun filled night and a night for our family to remember always.
Again, please keep Roman and all kids fighting this horrific battle we call CHILDHOOD CANCER in your prayers. 46 kids a day get diagnosed with a CHILDHOOD CANCER. You may never know... it could be your son, daughter, niece, nephew or family friends child. There are many types of CHILDHOOD CANCER...and even though our kids are battling different BEASTS, our kids are battling those beasts in the same battle.
God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. Love to all of you and God Bless!
Jody, Mike, Sheridan and Roman Fariello:)
|August 12, 2008
Hello to our family, friends and new friends! I do believe that today ranked right up there with being one of THE most difficult, most longest, most emotionally exhausting days since Roman was diagnosed April 25th, 2007. We arrived at the hospital a bit before 8:00am and they called us back right away to get him to start drinking his contrast. He did just great drinking every drop. Then we had to wait an hour. Then, right before they came to take him back, they put in his IV...not without blowing a vein first though. So, brave, strong no crying in pain at all, Roman gave up his other hand and they got it in. He went to sleep and about 25 minutes later we were called to come back and get him...he was done. We could not leave because for tomorrow's MIBG scan, Roman had to get his injection today at 2:30. So, we waited forever. Roman, again, being the best he can be waiting SOOOOO long all day. Then, we get called back to what we think is to do his injection and swallow some more yucky stuff to protect his thyroid for tomorrow...but then instead we get told this..."The radiologist that read Roman's Cat Scan wants to do a chest x-ray." Of course with no explaination given...even if we would have asked, they would not have known the reason why, and if they knew, they could not tell us. So, as you can imagine...Mike and I were fearing the absolute worst case scenario. Already knowing we still have not heard the bone marrow biopsy reaults yet from last Thursday, that news did NOT sit too well with us. Our moods INSTANTLY changed from already nervous to "OH MY GOD WHAT DID THEY FIND". Our hearts sunk. So, brave, strong, no complaining at all Roman, laid right up on the table and sat still for 3 minutes for a top view x-ray and a side view x-ray, with arms above his head. Have you ever wondered what it would be like to go from an already low 0 to a negative -100???? Like our world was flashing in front of us. After the x-ray Roman FINALLY got his injection, then his IV taken out after being in for 5 hours. Swallowed his yucky thyroid stuff and we left. We got sent home feeling the "R" word in our gut...that FEAR that I tried to explain to all of you in my last update. After what happened today, there are NO words to describe our fear to you. You, unless you have been there, will never know the kind of FEAR Mike and I had today. I could barely breathe. I was tearing up trying to be strong for Roman. I had a lump in my throat and could not swallow and the most indescribable feeling in my gut to the point of wanting to vomit. We did not hear results until later on tonight around 6:00pm. Our coordinator said first that Roman's HVA/VMA urine results came back normal. That is good because these are markers found in urine that can detect active Neuroblastoma. She also told us that Roman's Bone Marrow Biopsy results were "consistent with no evidence of disease" and they were sitting on a desk waiting for a final signature. And the reason for the chest x-ray was that when a child lays flat for a scan and gets general sleepy meds and gets intebated (tube down the throat), they sometimes can get air/fluid or both build up in there...so the radiologist was being thorough and wanted to make sure that what he saw on the Cat Scan was all gone. And it was. So, the CAT Scan results were NED, no evidence of disease. We are still "not out of the woods" so to speak because we have Roman's MIBG Scan tomorrow morning. We have to be there at 8:00 am and the scan will be hopefully at 9:00. If you can recall the last time Roman had an MIBG scan, they needed him to come back for the third day to scan a certain area in his chest. That came back last time all fine on the third day of the scan. That too was going thru mind as well thinking about the last MIBG scan and when we had to take Roman back for the 3rd day of viewing...we have never had to do that before. So, we hope and pray that tomorrow will be done and over with and we do not have to go back on Thursday. The next time someone complains about having a so called BAD DAY...I am going to just explode at them. What you conisider to be a "bad day" does NOT even come close to what a BAD DAY truly is.
I will ask for all of the prayers you can muster up for Roman for tomorrow. I cannot wait until this is over for another 3 months. Talk about a rollercoaster ride from you know where. Also, if you have not done so, please read my last update titled JODY'S FEAR. After the day Mike and I had today, you will truly appreciate why I wrote it. I will update as soon as I hear something about the MIBG scan results. Please, PLEASE say some prayers for a bunch of our fellow cancer families right now. If you can imagine, there are families we are close to right at Cincy Childrens who are going thru way worse than us right now. Just please pray for them. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. Love to all of you and we thank you for following us on such a grueling rollercoaster ride. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|August 9, 2008
Hello to our family, friends and new friends! As I have stated in my last few Roman Updates...I have had ALOT of things on my mind lately. My mind is very heavy. ALOT has been building up inside. I wanted to share with you my very personal thoughts...PLEASE READ THE ATTACHED... titled...JODY'S FEAR
Ok…take a very deep breath…and know that this is me, a cancer mom, venting…letting it all out…some of what I am about to say might not be easy to hear. BUT, it needs to be heard loud and clear by you…so I am sharing with you MY personal feelings at this time.
Have you ever wondered what it would be like to bury your child??? Unfortunately, I have. I have thought a whole lot about it as a matter of fact. Right down to the music, colors, etc. and how the day would be. Not by choice though, let’s get that clear right now. I am FORCED to “go there”, and “go there” EVERY DAY. I wake up, and “go there”…I feed Roman and
breakfast and “go there”…I watch my two beautiful children playing together and “go there”. And the list of “going there” is endless thru out the day, and into the night, and even when I go to bed, and even when I am not sleeping, which is pretty often. Have you ever thought about losing your house? Losing your car(s)? Losing your Job? Losing your income? Losing your insurance? Losing your ability to control your own household? All of the above mentioned are NOT due to your typical hardships…like losing your house because you lost your job etc. That is NOT what I am talking about. Nor am I talking about bad luck. What I am talking about is CHILDHOOD CANCER!!!
Can you even fathom the idea or notion that while going along life’s highway, you come across a very HUGE black hole and unfortunately you don’t just fall in, you get SUCKED in!!! Sucked into a world that little is known about, talked about and people even turn their heads about!!! It is a HUSHED world. This is a world that gets no air time, no radio time, no movie time, no “one hour special” time, no TV time of any kind ...NO NOTHING!!! IT GETS NOTHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Welcome to my world…this is the world that I live in. It’s a very dark world. No one likes to see bald headed teenagers, toddlers and babies. No one likes to see kids getting chemo, or having bone marrow biopsies done all the time, or surgeries to remove a tumor. Kids having central lines and feeding tubes down their nose. And YES, even death. NO ONE wants to see that or hear about it, and that is why it is NOT IN YOUR FACE… The Childhood Cancer World is very unpleasant to the OUTSIDE world in which it resides. It is not a pretty picture at all. From where I stand, the Childhood Cancer Underground (what I like to call it), is so desperately wanting and needing to be heard. It needs a voice. A platform to stand on.
There is another very DARK place, while inside the Childhood Cancer Underground. It is a place of total unknowns. It is a place of CONSTANT FEAR…CONSTANT FEAR…CONSTANT FEAR…CONSTANT FEAR… of what you asked???? Fear of one word…………..
Do you really want to be inside of my head and my heart and FEEL just a tiny bit of the FEAR I feel everyday? Here you go… Do you think you could have gone thru what Mike and I have gone thru? Do you really think that just because Roman is “doing fine” that he is OK!!!!!!! Do you really think that our lives are “easy” for us right now? Do you really think that just because all of Roman’s scans etc. have come back NED that EVERYTHING will be alright with him??? THINK AGAIN PEOPLE!!! I am here to tell you the NOT SO EASY TO HEAR part of this journey…
There is no book out there that has what Mike and I need to get thru each day. There is no book out there to FIX cancer in Roman and make him better. I cannot explain it to you enough except to compare Roman to a ticking time bomb…it could be in 2 weeks, it could be 2 years, it could be 10 years…
THAT my dear Roman followers, is what I am talking about!!! WE DO NOT KNOW IF AND WHEN IT WILL HAPPEN…the horrific reality of a RELAPSE is so high…all we do know for a fact is that the odds are horribly piled high and NOT in Roman’s favor either. This is the DARK REALITY for you right here, in black in white from me, the cancer mom. There are some of you who may be in denial with Roman still. Avoiding the “invitation” to our very own CHILDHOOD CANCER UNDERGROUND. These are the times that I am talking about…what would you say to people that ask, How’s Roman doing now, he’s ok now right?” or we get the comments about how “Roman wears his sunglasses so well for his age”…then it is up to me to bust their perfect little mood and ruin it by telling them that he has cancer and that the chemo has made him severely light sensitive and he ASKS to wear them. Then we also get, “but he looks fine, he’s eating fine, running, playing etc. YES, Mike and I know that, but PEOPLE…LISTEN TO ME, HEAR ME…..…NEUROBLASTOMA is an EVIL cancer. It hides. It’s very sneaky. It comes back with a death sentence…did you read that??? I will put it out there again for you…IT COMES BACKWITH A DEATH SENTENCE!!! That is the FEAR we live EVERY DAY we breathe. We eat it, drink it, sleep it, face it daily...24/7 non stop!!!!!
Do you see why it’s so hard to answer questions when we do not know the answers? All we can tell you is the facts. The docs did not just throw out a number to us of 33% for no reason. That number is a hard number to swallow, but it is a FACT. We know that with Roman’s type of cancer the relapse rate is extremely high. And God forbid that happens, we have NO “big guns” left to pull out to save him. He has had the “big guns” already with his transplant. So, you see why when I read about other NB kids, and share them with you and their personal stories, it’s because I want to be well informed and educated so you can be too. We do not know how long we have with Roman. Roman is on borrowed time. For that matter, I know we all are. It’s just that Roman’s own personal borrowed time is displayed on a clock like BIG BEN, huge and in our face everyday. I want so badly for all of you to “get it” or at least try to understand a little…why we do certain things, or why we say certain things. I had someone mention to me one time…”gosh, do you catch every little thing on video?” I bit my tongue but my answer is ABSOLUTELY YES... We DO! If you were faced with death like us everyday you would want to catch every silly, non important thing on video too. And, I also get so MAD when people compare ADULT cancers to Roman. No, he does not have breast cancer, or prostate cancer, lung cancer etc. He has CHILDHOOD CANCER…not ADULT CANCER. Which brings me to my next point…Do you think I enjoy going to any store out there in our country and not being able to buy a bag of candy without a pink ribbon on it??? Why don’t we have GOLD ribbons for childhood cancer on things, why not put GOLD ribbons on a bag of candy to spread awareness and raise the money that is so desperately needed…our kids are dying…what more do we need than that to do something!!! See, this is my world. I have nothing against breast cancer, in fact, right in my own family we have my mother in law and my sister in law who battled. But comparing Roman to an adult…well…is just NOT THE SAME THING!!! Roman is a toddler. He is not even potty trained, or lost his first tooth yet. Do you see why I get angry? Pink is everywhere. And I realize that PINK did not just happen overnight, but comparing that to Roman and the kids battling childhood cancer, is NOT the same thing. The fact is that only .03 cents, yes that is 3 lousy pennies, out of every dollar goes to childhood cancer. People out there may be saying “at least it’s something”…I say back to those people…tell that to the parents of a child battling, and even to parents who have lost their angels already. 3 lousy PENNIES is just NOT ENOUGH PEOPLE!!!!!!!!!!!!!! Do you really know why this is…because “they” say there is NOT ENOUGH KIDS WITH CANCER TO SPEND MORE MONEY TO DO THE RESEARCH…I say back to “them”…tell that to the parents who have Hospice in their home just waiting for their child to take his or her last breath!!!!!!!!!!!!!!!!!
WE NEED TO
MORE! Can you imagine having a set of identical twins. Two healthy girls, when all of a sudden one of them gets diagnosed with NB. Goes thru protocol and then is and has remained NED since then. They are Roman’s age. Then, Jan. of this year, the other twin got diagnosed with NB too and had to go thru the same thing as Roman only to have her die just a week ago. She was diagnosed in Jan. and died in August. That is only 8 months people!!!! Where are the newspapers for that story??? Where are the headlines for that family? Or here is another one…diagnosed at age 5 with NB. Went thru protocol just like Roman. Remained NED for 6 years. RELAPSED and battled for 2 more and DIED just on August 1st. Do you get the FEAR we have??? There is no safe time frame for Roman. There is no magic 5 years without any problems and consider it to be gone. NB comes and goes when it pleases. Can you imagine her parents and family, going along thinking and breathing easier knowing it was away from her for 6 years and then BOOM! Thrown back into the underground, only this time without any drug to help her or save her. Maybe a drug to buy her some time, but NOTHING TO SAVE HER…she died at the age of 14!!!!!!!!!!
See. That is what I am faced with. That is what Mike is faced with. That is what we want you to realize about our family. We have no safety net left. No life preserver left. We literally have faith and hope that God keeps Roman safe. That is all we have left. To those of you who still have unanswered questions etc. please go to our Cincy Childrens hospital and walk along the halls on the fifth floor/cancer floor…you will see the faces of the strongest most amazing kids and their families. Go sit in the clinic where Roman goes monthly and see the older kids struggling to walk from obvious chemo they got as they were younger. Go sit in the parent lounge and talk to the cancer parents about what it means to REALLY LIVE your LIFE. We live differently than you do. We appreciate more than you do. We look at things in a different way than you do. We cherish every single day, every moment with our kids more than you do. There is no comparison to the Childhood Cancer Underground parents and the parents on the outside. To those of you who cannot understand why I am so close to Debra Nickell, Jim Nickell, and to all of our other cancer parents out there, it’s because they live in the underground too with Mike and I. We are a much needed support family for each other. Can you see WHY I follow and read about and care about and get so involved with so many other families like ours? The reason is and should be so obvious to all of you. It is my life now. It is Mike’s life now. It is our life with childhood cancer. That is why when I do a Roman Update I ask all of you to show support for them too. I am really asking for your help for these families. If that means going to their carepage and leaving them a message of support, than do it…do it for Mike and
PLEASE…you cannot turn your head or your back anymore on childhood cancer!!! If I have ANYTHING to do about it, CHILDHOOD CANCER will be UP CLOSE AND PERSONAL! FACE CHILDHOOD CANCER HEAD ON!!! I am OPEN to ANY ideas that you, our Roman supporters, have out there to help raise awareness and much needed funds. Mike and I and the Nickells and all the other cancer families cannot do this alone. We need help. We need YOUR help. From people like you who are on the outside of the Childhood Cancer Underground.
We’d like to think that Roman will be around until he’s 100, but the reality of that happening…well… is very slim. Mike and I know that!!! We live THAT everyday. I think it’s time that everyone else realizes that too.
Whew!!!!!! OK…deep breath!!! Thank you for letting me let it out. Please Remember: these are my own feelings and my very own raw emotions that I have shared with you. Please do not take anything personal and/or out of context. I am a VENTING CANCER MOM on a serious mission to raise much needed awareness and funding for my son’s deadly disease and ALL Childhood Cancers. A Cancer Mom on a mission to raise much needed awareness and funds for ALL of Roman’s Warrior Friends and Angel Friends. Again, until YOU have walked in my shoes, you cannot relate. All of us know that Any and ALL cancer is bad for any family to have to endure…I just so happen to think that CHILDHOOD CANCER is far worse than you can even imagine or comprehend. God bless! Jody Fariello (Very Proud Cancer Mom of Childhood Cancer Warrior Roman)
|August 8, 2008
Hello to our family, friends and new friends! I heard from our coordinator a little while ago and she told me that Roman's Bone Marrow Preliminary results were "nothing found" and "looked good"...so, we are glad to hear that about the preliminary results...however...we will find out 100% for sure sometime Monday afternoon what the pathologist report says for sure and what the final results are. So, to Mike and I, this is good news but not time to celebrate just yet until we hear on Monday. I also wanted to go into a little bit on WHY we are having another Bowling Benefit for Roman. There seems to maybe be some "confusion" of some sort. Let me be very clear to all of you who support us everyday and care enough to follow us on this cancer journey with our son...I want all of you to understand that I realize the sense of "urgency" may be not there anymore like it was last year. However, that does NOT mean Roman is fine, or OK, or out of the woods, or cured, or Cancer Free...what it does mean is that the only thing that is different this year than last year, is that Roman has hair now, he is not bald like he was. What I mean by that is this...Roman still has cancer, he always will have cancer...it will never go away from him, it will NEVER leave his body. There is no "REMISSION" period or a 5 year NED period for Neuroblastoma. It is a DEADLY CHILDDOOD CANCER WITH NO CURE!!!!!!!!!! So, to those of you (may not be any of you) I want to clear the air so to speak just to make sure that you know the real deal...the "urgency" is still very much alive and in our face daily. We have used Rescue Roman benefit money for all of Roman's co-pays for the hospital and home care, deductibles, drugs, speech therapy etc. Not to mention I like to think ahead for Roman...all of the what if's that immediately come to mind like the word RELAPSE. If that word does not scare you, I do not know what will. Roman needs that "cushion" that all of you, his supporters, help give to him. All of the unknowns are very real and scary. We are blessed because of all of you. Some families are not so fortunate. So, I hope that helps in a nutshell the reason for the benefit. And, besides, it is a fun time...who doesn't like to bowl anyway!!! Come see Roman. See for yourselves how he is a true CANCER WARRIOR. If he doesn't make you think your problems are much less when you see him, then I think there is a problem with you. With EVERYTHING he has had to endure and still is able to smile, should be a FREE GIFT to you from him. A lesson that needs to be learned by all of us. I still have ALOT I need and want to say about some things, but will save it for the weekend sometime. God, please keep Roman's bone marrow free from Neuroblastoma cells. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. God bless all of you and many thanks...keep the prayers coming! Jody, Mike, Sheridan and Roman Fariello:)
|August 7, 2008
Hello to our family, friends and new friends! Well, it's been an extremely long morning...Roman had his Bone Marrow Biopsy and he is fine right now. I took a pic for those of you who have never seen something like this before, you can see why they are so painful because of where they do them. Roman is not bleeding as much this time as last time...that's a good thing...although with Roman being a 2 year old, that might change. I gave him some Tylenol immediately as soon as we came home. He is eating some lunch right now. The "sleepy doc" was running late today...imagine that for the Fariellos! We arrived at 6:25 this morning, and Roman did not go back until 9:45. I hope and pray to God that we NEVER have to do this EVER again! Roman did so amazing with the IV again and just everything that gets tossed at him. Mike and I would NOT be that way at all. He is such a trooper, so brave and so strong. We will not get the actual results back until next week sometime. We also sent Roman's urine away for the HVA/VMA (neuroblastoma markers). That will not be back until later sometime next week also. We should however hopefully get a preliminary result of the bone marrow aspirates maybe later today or tomrrow. The preliminary is a good predictor of the actual result, not 100% but a good predictor. So, we will be recovering from today's biopsy into tomorrow and then Roman should be pretty much back to himself. Please don't stop praying. I also sent you pics of Lauren and Joey's gifts to us from Korea...we love you both! And, the other two pics are of Roman playing in the sprinkler at Derney and Duppy's house from Sunday. Sheridan and Roman were with their cousin Ian having fun! So, I have ALOT of things I want to share with all of you, but will save it until probably the weekend. I will post as soon as I hear about the preliminary results from this morning. Thank you in advance for all of the prayers. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And, for all of the angels who have already earned their wings into heaven. Love to all of you and thanks so much for your support...specially today. Jody, Mike, Sheridan and Roman Fariello:)
|August 5, 2008
Hello to our family, friends and new friends! Well, today is just one of those real busy days. This morning (in the stormy rain) I had to take Roman and Sheridan to Crestview Childrens by us because Dr. Wagner needed Roman's labs drawn before Thursday's Bone Marrow Biopsy to make sure his counts were able to handle the biopsy. And, I just hung up with the coordinator and all of Roman's counts were great. So, we are ready to go for Thursday...we have to be there before the birds even wake up! I am not complaining though...at least Roman will be done and over with early and he won't miss eating or drinking. Then, I had to take Sheridan to her Kindergarten Camp day where they pair her up with another student and show her around and play games, make a craft etc. She was VERY excited to go. When we got there, she not only had one student assigned to her...she had two older girls that were going to take Sheridan around. Boy, they must sense already that she is a HANDFUL...but in a very good way though! We love you Sheridan Bug! Roman and I have to go back and pick her up at 3:30. I am quite sure she is having a blast.
I wanted to touch base with everyone and let you know that we have some really cool gifts that were donated for the bowling benefit on Friday the 15th. Do we have any Star Wars fans out there or high school football fans or Reds fans...I am not going to spill what we have, but know the items donated are great and it will be a fun time for everyone. Alot of raffle items and door prizes to be won by all of you! It is still not too late if you have something you want to donate for the benefit. We will also be having a cornhole toss for the kids and also be selling grab bags for the kids. So, plenty of kid friendly things to do at the benefit. All you parents out there bring your kids and have fun! We will also be selling new Rescue Roman Tshirts with an updated and in color picture of Roman taken by our most amazing photographer Mikki Schaffner. Mikki will also be at the benefit walking around taking pics of our supporters bowling and having fun to capture many memories for us. So, please spread the word and come out on the 15th for a night of fun with all of us. I have attached the flyer for you again. I have some more serious things to vent and share with all of you but will save it for a future post. We hope all of you can come for the Rescue Roman Bowling Benefit and we hope to see you, hug you and thank you in person! God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|August 1, 2008
Hello to our family, friends and new friends! Well, as you can see from the pics I sent to all of you...the kids and I went to Aunt Coleenie's (my sister) pool today!!! Had a blast! Roman has only been in her pool once and that was when he was about 10 months old. So, today, was a whole new learning process for him in the big pool. He did just fine. And, of course cried when I told him we had to leave and go home after being there 6 hours. Sheridan, she is just a little waterbug and was all over the place. Thank you Aunt Coleenie for having us...today was the first time we got to go to Aunt Coleenie's pool, it's been just very busy for all of us this summer. I also talked to Polly our nurse coordinator and we have some dates set for Roman's scans etc. Next Thursday, August 7th, Roman will have his Bone Marrow Biopsy done. We have to be there at 6:30am. This will be the FINAL bone marrow biopsy for Roman. The protocol he just completed for the past year and a half calls for one final biopsy being "off " or "done". So, we hope and pray to God that Roman will NEVER have to have another one in his life ever again!!!
Then on Tuesday August 12th at 9:00am, Roman will have his Cat Scan of his chest, abdomin and pelvis. And, at 2:30pm he will have his MIBG injection for the next day's MIBG Scan. On Wednesday August 13th at 9:00am, Roman will have his MIBG Scan. I know that all of you know the importance of these scans for Mike and I and our family. We will be on pins and needles and literally white knuckling it until we hear results on all of the above. Each test and scan just brings us right back to being sick to our stomaches and scared, very scared...that ever so horrific rollercoaster ride called CANCER. And, that horrilble and dreadful word...RELAPSE is ever so present and in our faces each and every day. Please, please start praying if you have not done so already. That is how Roman has made it this far, with all of your prayers and loving support. Prayers are what keeps us going. We need all the prayers we can get until we hear that Roman is NED (no evidence of disease).
I also want to thank those of you who signed the petition...those of you who did not, just do it for Roman. It only takes a few seconds.
God please keep Roman safe in your hands for his scans and his biopsy. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And, for all of the angels who have already earned their wings into heaven. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|July 29, 2008
Hello to our family, friends and new friends! We still do not have a date set for Roman's scans and bone marrow biopsy, the scheduler has been on vacation and we won't probably hear anything until Thursday sometime. I have a couple of requests: Please go to www.carepages.com type in NolanKenter and leave them some words of encouragement. Nolan spiked a "chemo" fever and is back in the hospital for an automatic 3 day stay and getting pumped with all kinds of antibiotics. They moved him to ICU for an infection in his pic line. he will not get a central line until Aug.11th. So, please if you have not done so already, go to their carepage and let them know we sent you.
Also, the Second Annual Rescue Roman Bowling Benefit will be on Friday August 15th from 7:00 til 11:00. I am sending out a HUGE request for help in getting some donations for the raffles and door prizes. We still need many more items to raffle off. Nothing is too small, we will make it work in a gift basket etc. So please, if you have any connections with anyone in retail, restaurants, personal services etc. please contact Jenn Fariello (cell# 859-801-3041) or myself. We will come pick up whatever item(s) are donated if need be also. We still could use a few more volunteers to work as well. For that, you can contact Anne at 513-621-9709. We literally have only 16 more days until the bowling benefit, and we could use your help. Thank you well in advance form us:)
I also wanted to ask all of you to still go to the www.petitionsite.com/1/CureChildhoodCancer
and sign the petition for Roman, for Corey, for Joe, for Bradley, for Toby, for Nolan, for Nicholas, for Chloe H, for Eliza, for Chloe P, for Eli, for Zebediah, for Eli, for Coleman, for Alyssa, for Shannon, for addison, for Annika, for Calla, for Hayden, for Isabella, for Rachel, for Kieran, for Laura, for
Mick, for Nathan, for Sabrina and so many many more...all of these cancer warriors still battling the fight of their young lives...and for these beautiful angels who have already earned their wings into heaven...Caroline, Victoria, Joey, Julian, John Eric, Marrissa, Grace, Sophia, Sara and AJ and so many many more. Please, it takes only a few seconds to sign the petition and let them know who you are and how Roman has touched your life. If you have done so already, I thank you, I truly thank you. I will leave you with the words of AJ's dad who is the main man behind the petition...
I have no idea if you have even been on the 9th floor at TX Children’s Hospital, or any other pediatric cancer floor. If you have ever walked the halls and seen the smiles or tears on the faces of these little fighters as they play on the little trikes and big wheels as they fight for their lives. How the moms and dads race behind them with the ever present IV pole. How they have little child-sized masks on because they are at high risk of infection. How the teens hang together and still try to be cool, even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their vocabulary, instead of LOL and "sweet". How they know what’s at stake and still get up every day, fight, smile…..LIVE! How the poor little baby's cry because they can't even relate what hurts. Or if you've ever seen a mom or dad alone in the break room at 3 am, with their head in their hands, feeling alone, helpless, scared and mad. Knowing they have no control over their world any more.
These are the many things Mike and I experienced while on the 5th floor (cancer floor) at Cincy Childrens. We of course experienced it first hand...because we were those parents who were awake at 3:00am worried to death about our Roman. So, please sign the petition. Thank you!
God, please keep blessing our Roman and all kids fighting the fight of their lives. And for all of the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|July 27, 2008
Hello to our family, friends and new friends!
It has been a very very busy last couple of days for our family...Friday night...we were invited to go to Milford in Mulberry Square/Kroger parking lot...every Friday night there is a car club called The Hoodlum Alley Boys, that meets there with about 300 classic cars. They were really cool to see. The main reason we were invited there was because The Hoodlum Alley Boys collected $1007.00 for Roman. They presented us with a check and the most beautiful card. You see, every Friday, from about April 'til the end of summer, they pick about 6 kids that are sick like Roman, and raise money for the family selling raffle tickets, split the pot etc. Corey Nickell and his Mom and Dad were blessed to get this amazing gift last year, but was unable to attend because Corey was in the hospital for treatment. So, it was nice that the Nickell's got to join us and say "thank you" in person and the crowd got to see both of our boys and our families. It was an even better night because I got to see Sherry Waddle...I used to work with Sherry at USFLI company in Blue Ash a few years ago. Now, Sherry works with my sister Coleen and that is how she found out about Roman and that is how we got picked to be the recipient of such a blessing. Sherry, it was so good seeing you, we cannot thank you enough for what you have done. Lonnie, the president of the car club, you are the nicest person and such a caring man for what you put together for families like ours every Friday night. It takes a special group of loving people to do what they do every week. To ALL those people who sold raffle tickets, split the pot, etc....Mike and I want to thank you from the bottom of our hearts. We are truly blessed by all of you. Roman has no idea how many people follow him, our story and why. But, when I show him these pics and cards when he gets older, he will:) Thanks again to the Hoodlum Alley Boys Car Club. God Bless all of you what you do each week. Saturday, brought some old emotions back for Mike and I. We finally got to meet face to face with Nolan Kenter's mom, Jenn. She came to our home Saturday afternoon. Debra Nickell was also here to meet Jenn. We both felt it necessary to meet her, hug her and shower her with support and info that she needed. Nolan just finished his first round of chemo and got to come home (to her mom's house by us here in Hebron). We had a good talk with her. She knows that she can count on us for ANYTHING! Debra and I also went shopping for her. Got her some things we felt she needed for hospital trips back and forth, and fed her family dinner last night. We know EXACTLY what she is feeling right now. The fear, the anger, the frustration, the unknown and the lack of sleep. Just everything she is experiencing. Whatever Debra and I could do to take any stress away at all, we did it. Or, at least we hope we did:) Please, again, if you have not done so already, go to www.carepages.com
and type in NolanKenter and leave them a message of support and love and tell them we sent you. For all of you know from the road we have traveled, they have a rough road ahead of them. Saturday night, I met with some of my grade school and childhood friends at LaRosas for a late dinner. I met with Michelle (Bastin) Foster, Kim Caine and Mary (DiMuzio) Pettway. We talked for almost 5 hrs. inside LaRosas and shut the place down. To my dear friends...you 3 have no idea how great it felt to relive some crazy and fun times with you. To be able to laugh and laugh til it hurts felt so wonderful. It was great seeing all 3 of you. And, I told you I would "fix" the pic:) You guys are the best...thank you for making me laugh so hard again. Today, was my niece Kady's bridal shower. Kady is my brother Dennis' oldest daughter. Kady, as you are getting married in 2 months here real soon...remember this...a wedding is just that, a wedding, a special day, a celebration...but a marriage is so much more than that...it takes strength, commitment, respect, love and most of all alot of humor. Yes, even in our darkest of days...Mike and I still find a way to laugh together. Here's to the best of luck and humor to you and Nick in the future! And, that brings me to the end of excitment from our weekend. We still have to drop off Sheridan's urine (hopefully tomorow) at the doc's office. Nothing is scheduled yet for Roman's Bone Marrow biopsy, Cat Scan and MIBG Scan...probably the first 2 weeks in August sometime. I will let you know when I know. God, we thank you for blessing us with great people like Sherry Waddle, Lonnie and The Hoodlum Alley Boys. God, please give Nolan and his family the strength they need to keep on going. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And for all of the angels who have already earned their wings into heaven. Love to all of you faithful Roman supporters...we would not be where we are without your loving support. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|July 24, 2008
Hello to our family, friends and new friends! Well, alot is going on right now, busy times. First of all, I took Sheridan to the pediatrician today for her 5 year check up for school. Everything is fine with her, however, she had a small amount of protein in her urine...so now we have to get a first morning urine sample to take back. Sheridan was not too sure about peeing in a cup...They are pretty confident the protein will be gone in the morning, but they want to make sure. (Something else for Mike and I to worry about, as if we don't have enough already). Anyway, she is ready for school now. And, she did get a shot in her arm which she was not happy about. She needed another MMR. I guess Ohio's shot schedules are different than Kentucky's. Oh well, she is ready to go now. Yesterday, we recieved the most thoughtful cards in the mail. We would like to acknowledge the great people and kids from Christ Community Church and Joy Community Church in Cincinnati Ohio... who made Roman and our family feel so loved with all of their amazing artwork and their personal messages of hope, faith and prayer. A very special Thank You to Cheryl Shallenberger (who works with my sister Coleen), for lifting Roman and our family up for prayer. Prayers are how we have managed to be where we are. We thank all of you for thinking of our family and sending us so much love thru the mail. We will keep every single card for Roman so he can see how many lives he touched. I also have many many prayer requests...but I will only write about one of them for now. A family has just recently been told their 2 year old son has Stage 3 High Risk Neuroblastoma. The carepage name is NolanKenter just as I have it spelled. His tumor inside his belly is the size of a football. They have to shrink it with chemo before they can even attempt to do surgery. I reached out to his mommy via email, as did my fellow NB mom Debra Nickell. We both got emails back from her. She has 2 other kids as well. They are from Independence KY. But in emailing her, she informed me that she will be staying with her mom who lives in Hebron. I of course emailed her and told her where in Hebron...she replied, Deer Creek subdivision...I of course emailed back and said "you are literally going to be staying right in my backyard...that is the subdivision right behind us". We can see houses from our deck in that subdivision. That's how close we are. So, I immediately told her I wanted to meet her and hug her and let her know she is NOT alone in this battle. I want to help her out in ANY way I can. I know Debra Nickell feels the same way I do. So, hopefully, as soon as they get discharged from the hospital, I will be able to meet her in person. I also told her in my email that God was already starting to work tiny miracles for her and her family by placing her so close to me. As I have told all of you before, I do not know why this happened to us and to Roman, but I can assure you it happened for some reason, we just don't know what that reason is yet. In the meantime though, I am going to help and "give back" in any way, shape or form for this family. I feel a very strong connection with them and I have never even met them yet. I know Mike feels the same way too about giving back and helping in any way we can and are able to. Please, go to their carepage and let them know I sent you. They have such a long, rough, demanding road ahead of them as all of you know because of us. Please pray for this family for me. Pray the chemo does it's job in shrinking this huge tumor in his tiny belly so a future surgery will remove all of it. Pray for them to have strength, faith and hope...even in the times when they feel like they cannot go on anymore. I have been there...I have felt that same way. I know what she is feeling and how she is feeling right now. Please God, give her the same strength you gave to me to get thru the darkest of days ahead that is coming for this family. I told her in my email that she can do it. And, I would be there for her in all the ways that I can. Again, please go to this family's carepage and leave them a message of support. Tell them who you are. I thank all of you in advance for doing this for me. I know they would appreciate any and all prayers, caring words of support and just let them know they are not alone. It means so much to the family...I know, because it still means the world to us:) That's it for now. God, give me the strength to help her and this family and be there for them in a way that myself and Debra Nickell can only be. Please keep Nolan in your hands God. Please keep Coleman Larson in your hands. God, please keep blessing our Roman and all kids fighting the fight of their lives each and everyday. And for all of the angels who have already earned their wings into heaven. Love to all of you! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|July 22, 2008
Hello to our family, friends and new friends! The first part of my update is about our Sheridan Bug's 5th birthday party! We had it here on Sunday. She had her little preschool friends here all dressed up in their favorite princess gear. All of the girls looked absolutely adorable! And, of course we had Roman and Ian dressed up in Superman and Peter Pan. We had family and friends here, it was a great time. Thanks so much to my sister Coleen for making Sheridan a beautiful cake! Thanks to her, it looked amazing, just like store bought...and the best thing is we knew it was safe for Roman to eat with his peanut allergy. Any of you bakers out there...there is a HUGE need to have a peanut free bakery, so that kids like Roman and Sheridan, who are siblings, can have a fancy/made up birthday cakes like everyone else. Biggs, Kroger, Sams etc. could not garauntee that the cake would not be cross contaminated...so, I thought about what we could do since Sheridan wanted a Princess Cake. Surprisingly, Coleen did not know she had such amazing cake decorating ability in her. Thank you Coleenie! Sheridan got so many fun gifts, she has not stopped playing with everything. I still cannot believe she is going into kindergarten. Anyway, I hope you enjoy all the birthday pics! Now, onto some other things. First, I want to thank those of you who have donated items already and yourselves for working the bowling benefit on the 15th. I know we are still in need of items to donate and more volunteers to work. So, I am throwing this big PLEASE HELP out there again to all of you. Contact Anne, Jenn or myself. Now, onto some sad news...my heart breaks each time I have to read bad news from one of our carepage families. Coleman Larson has medullablastoma. He had transplant a few months ago. He is already at the max for radiation that his little body can handle. His parents just got a call yesterday, that not only were there cancer cells back in his spinal tap that they did, but that he has several tumors on his spine as well. Just appeared there in a very short time frame too. Words just don't even describe their pain right now. Their uncertainty of what the docs are going to do next for Coleman if anything. I have been following Coleman for quite some time now. He comes from such a loving family. His parents and most of all his twin brother Caden. Yes, I said twin brother...can you even imagine what his parents are feeling...:( I really don't know what to say right now, except that I know his family would appreciate any and all prayers for them. (carepage name is ColemanScott). Please pray for this family for me. I know alot of you have things going on in your own lives, probably even some rough things right now. But, to me, since we have a child with cancer, there is nothing far worse than to know your child has relapsed. And that fear is our worse fear for Roman as we live thru each and everyday. There are no gaurantees. Mike and I have no gaurantees. We do not get to pick who lives and who dies, who gets to stay and play and who doesn't. We do not get to pick who gets to go to kindergarten and who doesn't. We do not get to pick who gets to have another birthday and who doesn't. There are no quick fixes... put a bandaid on it and go play. I wish it was that simple.Oh how I wish it were that simple for the Larson family now. Just please pray for them in their time of such needed support. Go to their carepage and let them know we sent you. Let them know they are being thought about right now. Cancer knows no boundries. It knows no age, race or gender. It crosses all human "lines" and human "divides". Just when you think your own little world is fine and could not be rocked or touched...think again. Just when you think you are safe and think "that only happenes to other people"...think again...you are touched by cancer because of Roman. Mike and I thought we were safe too and "thank God we have healthy kids" we always used to say to each other. Cancer DOES happen, it happened to us. God, please keep the Larson Team in your hands now. God, please keep blessing our Roman and all kids fighting for their lives each and every day. And, special prayers for the families without their warriors who are already in heaven now. These families are severely missing their kids like the Avery family, the Houston family, the Gruber family, the Bartels family, the Monroe family, the Burke family and so many many more. Thanks for letting me let it out:) Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|July 16, 2008
Hello to our family, friends and new friends! Well, we have even more wonderful news to share...Roman's triglyceride level went from a dangerously high 311 to a PERFECT 100...HOORAY!!!!!!!! That just goes to show you what an impact at even half dose that the accutane had on Roman's little body. I cannot tell you how happy we are to know we are officially DONE. Done with Protocol and now just check-ups and followups and scans etc. We can handle that because we know it's what keeps us informed of the cancer, but to know that we do not have to DRUG Roman anymore is such a blessing and a huge RELIEF!!! And, yesterday, as you can see from the blurry pics I sent, Roman and Sheridan got haircuts. This was not just an ordinary haircut for Roman. This one meant something very important...it was the first haircut he has had since before getting diagnosed last April 2007. This haircut meant we can kind of start over again with life. This haircut meant just one more step to "NORMALCY". Of course I took the kids where I have gone for years and years, to Kim at Z&D Hair Studio. It was so great seeing Roman sit up there like a big boy getting his "first" haircut. And, Sheridan, she is ready to start school next month with a really shorter cute haircut, and I still can't believe she is starting kindergarten. Well, that is it for now. Please say some prayers for 2 families I follow right now (cp:chloehightower) and (cp:ElizaS). While yesterday, we were getting the news we wanted to hear about Roman, these families were not so lucky. And, just so many more kids battling this EVIL everyday, so many I cannot list them all. Just please pray for all of these families, for they are just like we are with Roman. God, please keep blessing our Roman and all kids fighting for their lives. And, for the angels who have already earned their wings into heaven. We thank you for your prayers. Enjoy the blurry pics! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|July 15, 2008
Hello to our family, friends and new friends! We have WONDERFUL news to report...Roman's head Cat Scan came back normal being NED (no evidence of disease)...Thank You, Thank You, Thank You God! Now, we can sigh a HUGE sigh of pure relief!!! I must tell all of you how brave and how calm Roman was today... from the initial stick to get the IV in place to Roman NOT being put to sleep for his scan...YES, I said NOT being put to sleep!!! He laid still for the head scan and did an absolutely amazing job! He watched the Wiggles and laid in the tube real still for about 2 minutes that included the "practice pics" along with getting familiar with the table moving his body in and out and the big tube moving around him with the noise it brings. Then the real deal happened for about another 2 minutes...so about 4 minutes total, that is a very long time to lay still like Roman did, specially someone his age. Mike and I were extremely proud of him:) Roman, you continue to amaze us and shock us and make us even more proud of you (if that is possible)...how you have just simply "grown up" with how to handle ANYTHING that gets tossed at you, even the most painful things. We love you so much and we thank GOD above everyday for you:) We know what he accomplished today was a small "victory" because there are alot of kids way older than him that could not lay still like he did today...so HOORAY for ROMAN!!! After our scan, we had a clinic appt. with Dr. Wagner. They did draw a small tube of blood for a triglyceride level, but I do not have the results of that just yet. Dr. Wagner wants to make sure that they are indeed going back down since he's been off the accutane for a few weeks. Dr. Wagner also talked about stopping the accutane and the pros and cons. He said at this point in time, medically, stopping it right now really has no bad effect. He actually said that with the last round and all the new side effects, he could not gaurantee that those same side effects would not be even more worse than before if we decided to go forward. So, of course, wtih that being said, Mike and I were both confident that we made the right decision to NOT do the final round. We also talked about a maintenence schedule for Roman now. Until October, he will be seen once a month for checkup/labs. Then, gradually extend the time for visits to maybe 6 weeks and then even longer. It all depends on how Roman's counts and scans look as well. For the immediate future (next couple of weeks), Roman will have a bone marrow biopsy for just a final look at his bone marrow after being off protocol. And, in the first part of August, Roman will have a Cat Scan of his chest, belly and pelvis and an MIBG Scan for a 3 month check-up (last was end of May). So, that's where we are right now with everything. Dr. Wagner said he could not be more pleased with Roman. And, that made us feel very good. Roman is having a speech therapy session right now, that's all going very well. And, as soon as I get the triglyceride level back, probably tomorrow, I will update it. Until then, that's it for now. We thank all of you for your concern and prayers for Roman. It means the world to us and more than you will ever imgine that we have all of you thru every scan, test etc. to "lean" on. I know all of you realize that it is very scary for us. It is so comforting to us to know that sooooooooooo many people truly care about our son and our family. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven. Many Thanks! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|July 11, 2008
Hello to our family, friends and new friends! FUN....FUN.....FUN!!!!! Those were the words to describe what happened here at our home for Roman and Sheridan's Make A Wish. It was a hard decision to come up with a wish for both kids. Sheridan, being the older sister, many times "suffered" more than Roman did. Just with her age alone, Sher wanting her friends to come over when they could not because of germs etc. It was ALOT to ask of a little girl who really did not understand why things were happening with her baby brother. So, in every aspect, this wish come true for Roman is just as much for Sheridan. We decided to ask to have our backyard fenced in, and a playset/climber for the kids to grow up with and play with together for their wish. We were hoping that the Make A Wish org. would be able to handle it for us. We had NO IDEA what kind of climber we would be getting. It was absolutely amazing!!! The kids were so excited when they arrived here with Daddy and Derney and Duppy. I had Mike take the kids to Derny and Duppy's house all day so they would not see it being installed. Our Make A Wish sponsors, Brandon and Katrina Hartsel, planned a party for us and wanted it to be a surprise for the kids. Everything turned out so wonderful! We had our families here and very close friends to take part in the surprise. Mike and I want to thank some people who certainly deserve recognition for making a wish come true for Roman and Sheridan...The Make A Wish org. for granting our kids many many wonderful memories on such an awesome climber in a safe backyard! To Sara at the Make A Wish office in Cincinnati, for getting the ball rolling so fast for our kids and making this happen for them all the way to the end. To Brandon and Katrina, our sponsors, your loving support and the party for our family is a memory you made happen for us, and one that will never be forgotten. To Tom Boeddeker and the guys at Sharon Nursery in Cincinnati, who worked on our front yard and our backyard to make it look so wonderful! They were here last Saturday for 6 hours cutting, clipping, digging, mulching, planting and cleaning out all of our existing landscaping. Making it look nice for Mike and I and our home. We could not and would not have done what you did for us. We would not have had the time to do what you did for us. We are so thrilled and touched that you took on the task, free of charge to help out a family like ours. Again, thank you to the Hartsels for the referral and wanting to do something just for Mike and I. To Pete DeLois at Recreations Outlet, who came out and picked out such an amazing climber for our kids. And to the climber installers, Steve and James...all of you have made this wish possible for two little kids to make memories that will last a lifetime together right in our own backyard. We could not have had better weather either. It was very hot, and also very sunny and not rainy or stormy. So, we had a great time and the kids did not get off the set last night until after 10:00pm!!! Now, when people drive by and see our backyard, it looks like a park...Park Fariello!!! It will be a day that I will never forget. And, thinking about it...I have told a few family members and friends...when strangers drive by and see this awesome set in our bakyard (you cannot miss it, it's HUGE), they will be thinking to themselves..."Gee, they must be rich or loaded"...a perfectly normal response to seeing this in someone's backyard...And they just have NO idea why and how we got here and what the circumstances are...what they don't know is that a little boy suffered, tremendously, and still is with eye pain and headaches...an unknown future as far as him just being alive... horrific side effects known and some unknown in the future from chemo and radiation, etc. and a sister who has seen and witnessed more than most adults do in a lifetime. To say that we are "rich" or "loaded" is something I WISH that is ALL we were...... to not have a child with a life threatening cancer that could turn our world completely upside down if we were to ever lose him to Neuroblastoma. Thank you to all of you who keep praying for Roman. We still need lots of prayers...next week Roman will have a Cat Scan of his head to address his eye pain. I do not need to tell all of you we are scared about these eye episodes and scared of a relaspe. So, please pray for Roman on Tuesday morning at 8:00. I will update as soon as I know something. God, thank you for such a beautiful day yesterday. Thank you for blessing our family with so many amazing people in our lives. God, please keep blessing our Roman and all kids fighting for their lives everyday. And, for all of the angels who have already earned their wings into heaven. Love and thanks to all of you! Enjoy the pics! Jody, Mike, Sheridan and Roman Fariello:)
|July 8, 2008
Hello to our family, friends and new friends! Well, here is the scoop...Today, Roman had another eye pain episode, he went right to his little fold up couch in the playroom and laid down for about a minute, crying and rubbing his eyes, just like before. Out of nowhere these episodes come. Since his clinc appt. last week he has had 2 episodes with eye pain and crying and rubbing his eyes and today makes 3 total. I called Mike immediatley and then called Polly our coorodinator at Childrens. Since the epidsode today along with all of the other symptoms Roman has been having, Mike and I both are in agreement to NOT go ahead with the final round of accutane. The plan for now is Roman will have a Cat Scan of his head only, on Tuesday July 15, at 8:00 am. Following the scan, Roman and Mike and I are meeting with Dr. Wagner in clinic. I am not sure if he will draw labs to check his triglyceride level, since we are no longer going to be taking accutane. The scan is of course to rule out God forbid any cancer relapse and to make sure Roman's eyes are ok on the inside and nothing is going on in there. I do not have to tell all of you how scared we are of a relapse. This disease is just pure EVIL. Roman could very well be experiencing side effects still of the last round of accutane...we have no idea what is going on inside his eyes, he can't put it into words for us, only that he points to his eyelids and says "inside" and "hurt inside" and rubs them crying. The episodes last for about a minute or 2. Then, he bounces right back up and continues playing. So, the scan will put our minds at ease on Tuesday. Mom will be coming to stay with Sheridan. I know all of you will be praying for Roman. On a good note...we have the most wonderful news...Roman and Sheridan are getting their Make A Wish this Friday evening here at the house. There will be a small party with our families thrown together by our Make A Wish sponsors for the kids. I gotta tell you all I am so excited:) I will of course take plenty of pics and post them either that night or the next day. So, that is all I got right now. Please, pray Roman's eye pain means nothing is going on with him. And, pray for the kids Friday night that they are surprised about getting their Wish completed. God, please keep Roman's eyes, and head and entire little body free from EVIL. Please keep him safe in your hands. Please keep blessing our Roman and all kids fighting for their lives. And, for all of the angels who have already earned their wings into heaven. Thanks for the prayers in advance for Roman! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|July 3, 2008
Hello to our family, friends and new friends! Well, wow, where to begin...I spoke with Dr. Wagner today. Roman's triglyceride level was 311 from his lab results the other day. That is in the danger zone and enough to NOT start cycle 6 on this coming Sunday as scheduled. Dr. Wagner explained alot about the final cycle. And answered alot of questions both Mike and I had with moving forward. The plan is we are going to take a week off and talk to Dr. Wagner on next Thursday morning. He wants to see how Roman is feeling by then. Protocol calls for Roman to take a week off and re-draw his triglyceride level again after 7 days. If it is still high in the danger zone, then it is a no brainer that we stop here and end with completing only 5 rounds. If his number comes back like the previous results like a 283, then Dr. Wagner wants to talk to both of us about completing cycle 6. Mike is more "aggressive" to move forward and keep on with protocol, more so than I am. With Roman's new symptoms that he presented this cycle like the rash on both legs, the more numerous headaches, the eye pain and pressure, the time it took him to "recoop" from the last round (today was the first day he was actually Roman again from stopping on the 21st of June) and finally the dangerously high trigyceride level. All of that, I am NOT as aggressive with moving forward. If this drug could show me that Roman will NOT ever relapse, then of course I would proceed and give it to him no matter what side effects he has. But, this drug has NO gaurantees at all. It is the final maintenance part of this protocol. I feel that Roman's symptoms, defintitely outweigh the benefit from doing cycle 6. It is a horrible postion to be in for both Mike and I. No parent should EVER have to make decisions like this. We are going to wait this week and see how Roman is doing by the end of next week. That is all we know for sure right now. The rest of Roman's counts were all normal. Urine was normal also. So............... we now wait. Allow me to vent/let it all out a bit... I cannot tell all of you how exhausted I am from DRUGGING our baby boy. For the record, I am not speaking for Mike, these are all my feelings as Roman's Mommy...from knocking him down and back up again from every single round of chemo last year, thru a mentally and physically challenging transplant process for Roman and all of us, 12 rounds of radiation every single day for 12 days, and now 5 almost 6 months of knocking him down and back up again and again and again. I am OFFICIALLY done with it all. Emotionally drained and done. I, as his mommy, cannot handle one more round of this drug. The mood swings, the rage episodes, the crying jags, just ALL of it. I am the one who is here every single day with him and gets to see him when he is really bad thruout the day. No one else, besides me and Mike when he gets home from work, has to witness that day in and day out except for poor Sheridan. It is starting to show it's wear and tear on me as a Mom. There is nothing in this world that I would not do in order for our son to not have this deadly cancer. But our reality sucks. It all sucks! I cried today watching Roman as he was attempting to take a nap...he didn't of course, but knowing that he could be taken away from us at any given moment, scares the absolute !@#$ out of me. My tears today were about all the other kids who have not made it and are in heaven. My tears today were about those parents who no longer have thier kids to watch fall asleep on the floor anymore. My tears today were of me not wanting to poison my son anymore with this nasty drug and all of its horrible side effects. My tears today were of wonder...if we give him the final cycle, will it really make a difference. My tears today were thinking about the future...with all of these horrible side effects from everything that has been thrown at him, what is he going to be like in 5 years from now. My heart aches and I am having just one of those days. I do believe as a cancer Mom, I am entitled to have one of those days every now and then. And, tomorrow, I will get back up and ride the horrible ride of all the unknowns out there for Roman and for our family. I do this, because I have no choice. I am forced to. The only thing I know for certain is the love Mike and I feel for each other and for our children. And there is nothing in this world we would not do for them or each other. I will end there for now. Please everyone have a safe 4th of July. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels and their families, I do not know how you manage to do it everyday, my heart aches for you. God bless all of you and thanks for letting me vent. Jody, Mike, Sheridan and Roman Fariello:)
|July 1, 2008
Hello to our family, friends and new friends! Well, as some of you know, plans never stay the same and always change in the cancer world...Roman saw Dr. Motley and Dr. Wagner today (instead of Thursday). Let me tell all of you about the eye appts....Sheridan went for a routine eye exam she needed for kindergarten and she had her pupils dialated (of course she hated that part). She did very well...she has 20/20 vision and no problems. She is ready to start school in August. And Roman's eye follow-up went well too. We were fortunate to have Roman see Dr. Motley today on the same day we saw Dr. Wagner. Roman has been experiencing bad headaches and eye pain on the inside of both eyes. This started the day after we stopped cycle 5 last Saturday the 21st. We wanted to make sure that Roman did not have any swelling of the brain, which accutane can cause sometimes. The way to do this is an eye exam of the optic nerve...if there was any swelling, Dr. Motley would have been able to see it, the nerve itself would have been swollen, red and inflammed. Roman has been verbally telling me at times this past week that his "eyes hurt on the inside" and he would point to both eyelids as they were closed shut. He of course was crying too with this. So, I have been giving him tylenol. Talk about worrying a mother to death. Anyway, the plan for the immediate future is...see if in the next few days if Roman's symptoms clear up, hopefully they will, and then we can start the FINAL CYCLE of ACCUTANE on Sunday as planned. Dr. Wagner is going to call me on or before Saturday to check in on Roman and see if things are better. If things are NOT better, then we are not going to start cycle 5 on Sunday, we will hold off until arrangements can be made for a Cat Scan/MRI combo next week sometime to make sure he is ok and nothing is going on. So, it is of course a wait and see time for us here in the Fariello household. So far today, Roman only complained about his eyes first thing this morning and nothing the rest of the day. Hopefully, things are getting better. We also had a lab draw today...Roman did not even flinch one bit, not one tear...all he said when the needle went in was "ouch" and that was it. I was so very proud of him. Derney was so very proud of him. He has grown up so much thru all of is, and takes everything tossed at him with NO complaints. He surely could teach many of us adults a thing or two about being strong and not whinning over every little thing that goes wrong in our daily lives. Derney went with us to both doctor appts. today...we love you Derney! Your help is worth more than you know:) We will not get results back until Thursday for both bloodwork and urinalysis. I will of course keep you informed on Roman and his results when I know.
I want to end tonight by sharing some very good "insight" on why moms like me are chosen to be cancer moms...another neuroblastoma mom sent this to all of her supporters. Thank you Yvette!
God picks ' happy ' people to give a
Most women become mothers by accident , some by choice , a few by social pressures and a couple by habit .
This year many women will become a mother of a Cancer child. Did you ever wonder how mothers of Cancer children are chosen?
Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs his angels to make notes in a giant ledger.
" Armstrong ,Beth, son. Patron saint .... Matthew. Forrest, Majorie, daughter, patron saint, Cecelia."
" Rudledge, Carrie, twins, patron saint.... give her Gerard. He's used to profanity."
Finally, He passed a name to an angel and smiles,
" Give her a cancer child."
The angel is curious. " Why this one, God? She's so happy."
"exactly," smiles God. " Could I give a cancer child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asked the angel
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it.
" I watched her today. She has the feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give is going to have cancer , this child will go through many things , the road they are to travel will become very hard . She has to have these traits to face this with her child , and it's not going to be easy."
"But lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from her child occansionally, she'll never survive. Yes, here is a woman whom I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'mommy' for the first time, she will be present at a miracle and know it! Every hug and kiss , every giggle and cry she will cherish for fear it may be the last she hears when she has a child with cancer .....
"I will permit her to see clearly the things I see.... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
" God smiles. "A mirror will suffice."
I loved reading that and I feel it is so very true of all cancer moms:) I will update soon, probably Thursday. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven. Thanks for the prayers, your love and support for Roman and our family. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 29, 2008
Hello to our family, friends and new friends! It has been a busy and fun weekend here at the Fariello household. Mike and I took the kids over to Derney and Duppy's house bright and early by 10:30 am Saturday morning for a sleepover. The kids were so excited to spend the night with Derny and Duppy. Although with all of their stuff, it looked like we were moving in! The reason for Mom and Dad keeping the kids was...Mike and I (and the Powells too) were involved in a very sneaky plot for Jim Nickell's (Corey's daddy) 40th b-day. It was an all day affair with getting him out of the house and then going to the Firemans Hall in Milford to decorate and get ready to surprise him...and boy was he surprised:) Happy Birthday Jim and we thank you Debra for letting us be a part of the planning, sneaking around and the fun. It was a great time had by all. Of course...we always have fun with the Powells and the Nickells!!! Then, today, Mike and I had a great lunch together before getting the kids from Mom and Dad's. We also got some more fish for the kids aquarium while we were out. They of course like them all. Then tonight, we went to a late dinner at Arby's...we took the kids in to eat...but before we got inside, we saw the most beautiful rainbow! It was quite a moment, considering Roman has never seen a rainbow before. He turned his head in that direction, so we hope he got to see it:) It's so amazing how the smallest of things in life (usually free) are the most heartwarming and meaningful...like a rainbow! This week, is a semi busy week for us. On Tuesday morning, both Sheridan and Roman have eye appts. with Dr. Motley (Roman's eye doc). Roman's is for a follow up to make sure he is still at status quo just like all of the previous visits...Sheridan's is an actual eye exam for her to get into kindergarten this year. So, I will let all of you know what happens on Tuesday sometime. Then, on Thursday morning at 10:00am, Roman has a clinic appt. with Dr. Wagner. Of course this visit is to check lab counts, especially his triglyceride level. And, to also look at Roman's leg rash, which is still there by the way. Even applying Aquaphor has helped some, but it has not cleared it up completely. So, I am glad we are seeing Dr. Wagner soon to set my mind at ease about the rash, the headaches and to discuss round 6 of Accutane. The FINAL cycle!!! And, now onto some fun news...Roman and Sheridan's Make A Wish should be completed on July 11th. I cannot stress enough to all of you how thrilled and excited I am for them. They are going to have the absolute best of times with their wish and all the while be making many many memories for our family, but most of all for each other. I still do not want to spoil the surprise and tell all of you yet what the wish is...so.....you will have to wait and see real soon:) I guess that is it for now. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 25, 2008
Hello to our family, friends and new friends! First things first...the pics I sent to all of you are of Roman's legs below his knees. This horrible rash is compliments of the accutane...many thanks accutane!!! I guess we will deal with this rash as long as we NEVER see EVIL NB again!!! Poor Roman, he is such a trooper...he said to me that his legs hurt where the rash is. I found out this was compliments of accutane from Debra Nickell...Corey had a very similar rash on both of his legs for his last cycle of accutane. Thanks for the info Debra and putting me at ease, we love ya! Tonight, we have NO water in the house...they are doing construction behind us on the road all the way up to the expressway and they hit a water main and water was pouring out all over...of course we have no idea when it will be fixed either. So, we took the kids to the mall for dinner in the food court. I gotta tell all of you, I was a nervous wreck in the mall...not because of germs really, but because of Roman's peanut allergy...we have no idea since we have been in isolation so long, what will effect him and what won't. It was just scary walking in the mall and Roman touching rails and walls and doing what little kids do, thinking to myself did someone just eat a peanut butter cookie and touch the wall...but when you have dealt with what we have had to deal with, with germs on top of the whole peanut allergy thing it was even more than scarier than ever! We know that McDonalds is safe for him so we ate and then of course, the kids wanted to ride the merry go round here in our mall in Florence Ky. So, Mike had Roman on a zebra and I had Sheridan on a dragon...they had a blast:) If the kids only knew that even though I am not a go in circles kind of rider, Mike and I both would not have traded that moment for anything. And, we have really been in isolation too long because...tonight.................. Roman got to ride the escalator for the very first time in his life...and he said "Weeeeeeeeeeeeee" and he loved it!!! That moment, my dear friends, was PRICELESS!!!!!!!!! He has been out of the real world for so long, he has so much to catch up on that he has missed. With something so simple that all of you take for granted, tonight Roman took one more step in his cancer journey towards "NORMALCY". Thank you God for escalators:) We could not have had a better time...but as all of you parents with young ones know...when they have had enough they have had enough. So, we then came on home and still, we have no water.
I also want to quickly let all of you know that the ball is definitely rolling with Roman and Sheridan's wish...I can't wait to tell all of you what it is when it happens. That's it for now. Please pray we get water soon here. God, thank you for letting Roman have milestones and fun like he had tonight, for he's been thru way too much. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 23, 2008
Hello to our family, friends and new friends! Roman completed cycle 5 of accutane Saturday night. 5 down and only 1 more cycle to go...hooray!!! We have an off week this week from clinic. Roman does have speech therapy tomorrow afternoon. We will of course have to go to clinic sometime next week before starting cycle 6...probably next Thursday for a doc visit, lab work and urinalysis. Hopefully Roman's triglyceride level stayed the same so he can officially complete this horrific protocol that he started last April/May of 2007. His skin took a "beating" this time around with really bad dry areas on his face, forehead and cheeks being the worst, even some by and inside his ears. He has had alot more crying jags with this round than before. Not too many terrible rage episodes that he experienced a couple rounds ago. The episodes have been "milder" and we thank God for that. So, he is doing just fine and he is handling things very well. I feel he is starting to tired of the icing though...I would be tired of the icing by now too. He sees us put the accutane on the spoon with the icing twice a day, and he still takes it and licks the spoon clean for us...he is such a trooper and he is so amazingly strong. Speeking of strong....I don't know how many of you actually saw the following 3 news clips about a man who just may have found the answer to helping people/kids with cancer from having to take such harsh chemo and radiation like Roman has had to do. Please watch as this man may hold the key...it is very interesting and of course we are very hopeful that he can change cancer treatment as we know it. I wanted to share this with all of you so that you too can start praying for miracles for kids like Roman; as we pray for miracles all the time here at the Fariello household. When you watch the videos, it is amazing when you find out WHY he wants to do what he is doing:) That's it for now. We thank all of you for your continued love and support for Roman and our family. Knowing you are there for us, makes the biggest impact ever...you will never know how big. God, please keep blessing our Roman and all kids fighting for their lives. And all of the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 18, 2008
Hello to our family, friends and new friends!!! Today, was the first actual day since Roman's diagnosis that felt "normal" to me. My best friend Anne (Roman's benefit planner), her 3 girls and Roman, Sheridan and I got together today at the park and had a picnic lunch. It was an awesome day for all of us. Anne's girls finally got to see Roman and see for themselves that he is doing better and he can play with them now. Anne, we love you and we had such a great time today!!! Thanks! I got to enjoy watching Roman and Sheridan play on the huge climber and they just had a blast. I also got to see a girl I used to go to grade school and high school with...Mary Jones (Laird). Mary, it was so good to see you and talk with you. I am so glad you got to see Roman and Sheridan too. So, we had a great day of being "normal". And, I gotta tell you all that it felt just great too:) Roman is napping now as he is exhausted from playing hard today. The pics I sent to all of you are Roman, Sheridan and Anne's 3 girls...Elizabeth, Olivia and Clara. The kids were kids today. One of the many blessings I got to witness today. Thank you God! Roman had speech therapy yesterday and all went well. He will end cycle 5 of Accutane this coming Staurday night. He is tolerating this time around pretty well. Just dry skin on his face and forehead. He also had a few minor runny nose bleeds, nothing bad...side effect of Accutane. So, no complaints on our end here. We hope all of you enjoy the pics and the kids being "normal" today. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have earned their wings into heaven. God, thank you for giving me, a cancer mom, such a beautiful day with my kids. Love to all of you and many thanks for your continued prayers and support! Jody, Mike, Sheridan and Roman Fariello:)
|June 16, 2008
Hello to our family, friends and new friends!!!
I want to share with you some videos that a fellow cancer mom named Mimi wanted to make in honor of her son Julian, who died earlier this year of Medullablastoma. She wanted to do something to make everyone see how cancer truly affects our kids. Some of the pictures shown are very rough to see, but the pics need to be seen. There are 3 videos...the first video is of some angels who are in heaven already taken away by different types of childhood cancers. The second and third are of cancer warriors who are still battling like Roman and Corey. Both Roman and Corey are in the second video...Roman is towards the beginning and Corey is towards the end. We are going to post the videos on RescueRoman.org also. Please give yourself a couple of minutes to watch the videos. Just click on each of the 3 links and watch. Just take in the angel faces who are in heaven now and the faces and smiles of kids who are still battling. Love to all of you and thanks for your support...Roman thanks you for watching:) As long as we have the beautiful and courageous smiles of our cancer children, we will forever have hope!!!
|June 15, 2008
Hello to our family, friends and new friends! Well, it is Father's Day 2008. A far cry from this time last year. Mike had just finiched a 2 day stay with Roman in the hospital and then hads to be the "fun" dad to Sheridan for that day. I look back at that time today, and we have come so far. This year, I got to make Mike breakfast (YES...I cooked, can you believe it)!!! Mike got to wake up with both of his kids under one roof. Last year, was not a time for celebrating much of anything or any holidays. But this year, is different. A very good different. I want Mike to know that I think he is an amazing huband and daddy. If it were not for him, I would fall apart. He is my rock. I want him to know that I love him. Sheridan and Roman love him. And some day when our kids are old enough to understand how their Daddy gave them the best gift in the world...himself. Mike so enjoys his kids, playing, wrestling around, cooking with them, showing them how to do things, playing games etc. He is the ultimate teacher for them. This Father's Day is more than special for us here at the Fariello household...it marks a spot in this journey that feels good and feels "normal". We love you Mike! Oh, and I have to mention my father- in- law John, also knows as Duppy...you are such an amazing grandpa with Sheridan, Roman and Ian. The kids love you so much and enjoy spending time with their Duppy. We just want to give a special Father's Day acknowledgement to Dad for all of his love, support, and time that he gives to all 3 of his grandkids. Sheridan, Roman and Ian love you more than you will ever know. They are truly blessed to have a grandpa as wonderful as you are. We love you Dad! And, to all of the other dads out there that we know personally, and those we have never met...enjoy today! Enjoy life, enjoy your kids. And best of all...enjoy precious time! Happy Father's Day!
|June 13, 2008
Hello to our family, friends and new friends! Well, unfortunately EVIL neuroblastoma strikes again and has taken a beautiful little girl away from her parents and family. Marissa Monroe earned her angel wings this morning and took her last breath in her mommy's arms at 5:42. Marissa was around Roman's age. Her Daddy was one of the Daddy's who rode across the country on his bike to raise awareness and research funds for neuroblastoma in the Lonliest Road Campaign. My heart aches everytime I get news that this EVIL prevailed and has taken another child with the same disease just like Roman. It scares me and I can't describe the feeling to you. I know alot of you do not like it when I post about kids dying from neuroblastoma or any other cancer. And, because of that you "skim" thru my updates. Well, I gotta tell you that Marissa's parents did not get a chance to "skim thru" anything. However, I am sure they wish they could have skimmed thru alot of the horrible times in their baby girl's journey, seeing her get to where she is now as of this morning. So, to those of you who normally "skim thru" my updates, this is our true reality. The reality of knowing that our son, Roman, has this deadly disease and Mike and I surely don't get to "skim thru" anything. I know it is difficult for alot of you to understand at great lengths what we go thru on a daily basis, but, maybe you can find it in yourselves somewhere to try to read what I have to say in honor of the parents and their angels. It is nothing personal to those of you who can't handle it... heck I can't handle it at times either, but you can at least try. See, their reality becomes our reality with the death of their kids. It is a very hard thing to put into words for all of you. These updates are like my therapy, please remember that. These are my feelings and I am sad and mad this morning because of Neuroblastoma. I am sad and mad that it has taken another very young baby girl away. I feel for those parents. Yet, here I am this morning, waking up with Roman and Sheridan. I look at Roman and to know that he could also be taken away from me, Mike and all of you too, there are no words to describe that to you. All I can share with you is the reality of our world. And that world is always very scary. Also, yesterday, we got a postcard picture from Victoria Love Houston's parents. Of course I wanted to tear up so badly as soon as I knew who it was from even before I opened it up, but I couldn't because the kids were standing right next to me. So, I cried on the way to a meeting I had to go to in the car alone. Victoria's picture/postcard will be on our fridge forever. I placed her right next to Roman's picture where a magnet with the word "survivor" is underneath him. We are all feeling better in our household. Roman has had a couple of runny nose bleeds from being on the accutane. It dries everything out, including your nose and inside of your nose. He did have a couple of bad meltdowns yesterday, but still not to the point of rage as of yet. Hopefully he will NOT have any of those rage episodes this time around. I want to let all of you know that my sister in law Jenn Fariello (Mike's brother- Andy's wife) is graduating tonight from UC with her Masters in Pharmaceutical Sciences. We are very proud of her and want her to know that we know it's been tough at times with trying to be a mom for Ian, working full time still and going to school for the past couple of years to get to tonight. You did it and we love you Aunt Jenn and are very proud of you! I guess that is all I have for now. Thanks for letting me vent and letting me get out my being frustrated. God, please give the Monroe family the strength they need to get thru today, and everyday after that. Please keep little Marissa safe in your hands. God, please keep blessing our Roman and all kids fighting for their lives. And, for all of the angels who have already earned their wings into heaven, John Eric, Victoria, Joey, Marissa, Caroline, Grace, Julian...far too many for me to list. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:(
|June 11, 2008
Hello to our family, friends and new friends! Well, ALOT has happened since I have updated last. Late last night and early this morning, Sheridan Bug complained of her right ear hurting her...so, yes, of course we went to the pediatrician late this afternoon. Sheridan does not have an ear infection, she has swimmers ear. So, she now has ear drops and also a z-pack for the next 5 days because of her cough and they took her temp and she was running a fever. I took it twice today and no fever, go figure. This child does not act like she has a fever. The energy level of our daughter...she could run a ton of circles around anyone. She will be fine soon. Roman is back to his little cute self. Still coughing and a runny nose but feeling much better. Mike's sunburn is still there but he is feeling better each day. And me, I am feeling better today, at least I have a voice today. I have wonderful news tonight to report from the Nickell family...Corey's MIBG Scan was NED, no evidence of disease, and his preliminary bone marrow aspirates came back NED also. The final bone marrow biopsy report will probably be in on Friday. But, thank you for all of your prayers for Corey. I also want to throw out a HUGE thank you to Suzanne Byrns (Sher's preschool director) for referring the Women On Mission group at Hebron Baptist Church for helping out with a beautiful and much needed gift for the families up on the Bone Marrow Unit at Cincy Childrens yesterday. The group of women put together a bunch of pre-packed foods and snacks and bagels and a fruit basket for the parent lounge where I spent alot of time during Roman's transplant last October. Suzanne knew from me talking about all of the families that were out of town up there and alot of them without money for food and snacks etc. My heart could not be more filled by their generousity and thoughtfulness. People still amaze me and the good inside people, even strangers. And, I know for a fact that alot of parents yesterday got some much needed yummy fruit and snacks etc. and that if they could thank you in person, they would. So, I will thank you for them. Again, the Hebron Baptist Church comes thru and goes out of their way to help people in need. Many thanks to Sandy Davis for delivering the food yesterday. God bless the Women On Mission group, and Sandy for helping the parents on the bone marrow unit have a good break. Thanks again Suzanne Byrns, you are the best there is. Also, the Make A Wish contact person called me yesterday. The ball is starting to roll here for things to start happening with their wish. I will let all of you know when it is a done deal. It is something really fun and exciting for Roman and Sheridan both. And, so deserving to the both of them. Roman is doing so far so good on cycle 5 of Accutane. Just dry skin on his face and not really any bad rage meltdowns as of yet. So, I guess that is all I have for now. Please pray for our carepage families (there are so many I follow, too many to list here) ...alot of them are dealing with way worse situations right now than we are...like a child who has relapsed or a child who is getting called into heaven. Just please pray for them. God, thank you for keeping our little Corey Man safe in your hands today. God, thank you for keeping both Roman and Corey NED from this EVIL they both battle daily. God, please keep blessing our Roman and all kids fighting for their lives. And for all of the angels who have already earned their wings into heaven. Love to all of you and thanks for your continued support and prayers. It is because of all of you that we continue to fight on every day. Jody, Mike, Sheridan and Roman Fariello:)
|June 9, 2008
Hello to our family, friends and new friends! We hope all of you had a better weekend than we did...Roman has been so sick. It has been hard to see him like this. He really has not been sick at ALL thruout this whole journey. Oustside of his transplant and being sicker than we ever could have imagined, we really have been very lucky and careful with Roman. We have gone thru the entire winter without Roman catching anything, even from Sheridan being in preschool, and here we are at the end of spring almost and he catches something and is sicker than ever. He has had a fever of about 101 or so off and on. He has been puking some, coughing and a bit of diarrhea too. Sheridan has a wet cough (allergy related I hope), Mike is sun burned real bad on his back from staining the rest of our deck, and now this morning, I have lost my voice and I sound sick and feel a bit warm with a low fever, and of course coughing. With all of that being said...as you can imagine we had a BLAST (yea right) this weekend at the Fariello household. This morning, Roman appears to be feeling a bit better than he has all weekend. We also started Cycle 5 of his oral chemo (accutane) on Sunday (yesterday). I cannot believe he is already on Cycle 5. I cannot wait til we don't have to give him ANY more chemo drugs and we can finally say we are done with this protocol. That time will be next month in July. Other than Roman feeling bla, he is still wanting to play, antagonize his Sissy, and he is eating and drinking well. So, we have officially been tossed back into what a normal family deals with. It feels weird that we are dealing with a "normal" sickness. I know it will take some getting used to for us each time this happens. I also know that I, as Roman's mommy, will NEVER look at him the same way as before all of this. I cannot imagine that many Moms would in my shoes either. Every single time Roman gets "normal" sick in the future, which I know he will get of course, I will silently be thinking (Oh No...this cannot be cancer AGAIN ), always looking over my shoulder. I do have a prayer request...Corey Nickell has a bone marrow biopsy tomorrow morning and he will have an MIBG Scan on Wed. As you all know, the Nickells are family to us...we want them to know that the prayers for Roman go for Corey as well. Debra and Jim, we will of course be thinking and praying and holding our breath with you until you get that phone call. We love you guys! Well, that's all I got for now. God, please keep Corey safe in your hands this week with his biopsy and scan. God, please keep blessing our Roman and all kids fighting for their lives and for all of the angels who have earned their wings already into heaven. Love to all of you and thank you for the prayers and support! Jody, Mike, Sheridan and Roman Fariello:)
|June 6, 2008
Hello to our family, friends and new friends! I know all of you are probably tired of hearing from me today...I just forgot to tell all of you in the last update that I wanted to thank my mother in law (Derney) for coming over here early this morning so quickly. I called the house this morning at like 6:00 to let them know about Roman and that we would be needing Mom today. Either to go with me so Mike could stay with Sheridan or to stay here with Sheridan so Mike could go with me. I gotta tell all of you that Mike and I would be totally lost without her. She is the reason we get to take care of things and are able to do what we do. I read the Roman Update after I sent it out and I noticed I forgot to thank her for helping us. Mom, we love you and could not be existing with out you. You are such an amazing grandma (Derney)!!! And Mom, enjoy your weekend AWAY from the Hebron Fariellos! We love you! Everyone, have a good weekend:) Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 6, 2008
Hello to our family, friends and new friends! We are home. We just walked into the door. Well, as I said...NEVER a dull moment!!! Roman was checked out by Dr. Absalon. We actually saw him around Roman's 2nd round of chemo last year while in the hospital. The doc told us "this was going to be a different kind of visit for him, as he always has to deal with more serious issues like central lines, chemo fevers, etc., and that Roman's visit was more like an actual pediatrician sick visit". Well, that being said, he felt that whatever Roman woke up with this morning may be the start of something viral, he was not sure. He did say that if it were viral, that it would probably get worse in the next 3 days before it gets better. Roman's oxygen was fine, his pulse was fine, his heart rate was fine, his temp was normal (because of tylenol) and his cough was still there but he was not doing it as much as this morning. The most important thing was that his lungs were clear and nothing alarmed them at all. I guess we just have to watch him this weekend and see what happens. Now, as I asked Mike...when do we get to "cross-over" to reacting "normal" to things like what happened today with Roman??? When do we as his parents know when he is just "sick normal" or "sick serious" enough to alarm us??? I don't have an answer to that. All I know is that our pre-cancer life and days are long gone...and here we are, going along Roman's journey and every single little cough, cold, fever, etc. has changed us beyond how normal parents react to things. Life will never be NORMAL for us ever again. And, believe it or not, we have accepted that way of life...as long as Roman is safe and Sheridan is safe. That is all that matters to us anyway. So, Roman gets to "ride it out" with this and was given no antibiotic of any kind or any kind of drug to help him get thru this. It amazes me that what we have been thru, I was expecting to have all kinds of drugs thrown at us, like we are used to. Not this time, Roman gets to go thru it solo. We thank all of you for your constant prayers. They obviously help us thru our most trying times and then some. You can't even imagine. Our cancer families can appreciate what I am about to say... Our life is like a rollercoaster full of ups and downs and twisty tuns and sometime even upsidedown. Sometimes your even stuck for awhile. A rollercoaster ride I pray that you never have to be on. Please, have a good weekend everyone. I will keep you posted on any changes. God, please keep blessing our Roman and for keeping him safe from serious illness today. God, please bless all kids fighting for their lives and for all the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 6, 2008
Hello to our family, friends and new friends! Never a dull moment in the Fariello household...this morning we were woken by Roman walking around in our bedroom at 5:30, sounding like he could not breathe, he had the deepest chest cough. Mike felt him and he was running a fever of 100. He felt really hot. So, we gave him some tylenol and called our coordinator Polly right away. Dr. Wagner is not in clinic today since he saw Roman yesterday for his actual clinic visit. We are taking him this morning obviously to get checked by someone. The cough is very concerning... it sounds like it is in his chest real deep. He was just fine yesterday. This came on him over night. Please pray this is something NOT too serious for Roman. As other cancer parents can relate and have told us...there will never be a time in Roman's life that you will not worry from now on over every single illness or thing that happens to him. This is definitely one of those times. I will post later today when we find something out. Please pray that Roman does not have anything serious going on. Anyone who knows me well, knows that I am worried to beyond right now. Mike is calm, cool and collected. Thank God one of us can be that way! God, please keep Roman safe. God please keep blessing our Roman. With hope of a good outcome today!!!! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 4, 2008
Hello to our family, friends and new friends! Wow, if your household is like ours today it is very tired from all the storms in the past 36 hrs. Roman is fine with them but Sheridan is anything BUT fine with storms. Yesterday we went to the basement because our county had an actual tornado warning and an unconfirmed siting by the airport here. We live near the airport, it is not that far away, so going to the basement as you can imagine freaked poor Sheridan out completely. She did not want to go to bed last night. Anyway, we are all safe and sound today. Even though they are talking about more storms later today. I wanted to let all of you know that Roman has a clinic appt. tomorrow at 11:00 with Dr.Wagner. He will check Roman out and make sure he is good to go for starting cycle 5 of oral chemo on Sunday. They will also be checking Roman's urine. He will not have labs this time around since they did them last week during all the scans. His lab results were as follows: White count 8.2, Hemoglobin 11.7, Platelets 389, ANC is 4510 and his Triglycerides 214. All of his renal was normal. So, all we need is the urine results. He really is doing amazing. His counts have come a very long way. I will post tomorrow when I have urine results.
Now, I want to take this time to thank one of the amazing moms in our neighborhood. Stacey Murphy made us the most delicious Italian dinner the other night. Mike was so excited because he did not have to cook. We cannot thank you enough for thinking about us and wanting to help us in any way you can. We have such wonderful moms and neighbors in our subdivision. It is those exact little things that make all the difference in the world to us. Stacey, God bless you for helping us just because you wanted to. I also want to tell a huge thank you for signing the childhood cancer petition. If you have not done so, PLEASE go to www.thepetitionsite.com/1/CureChildhoodCancer
and sign the petition. Let people know that what has happended to our Roman has changed you. Let people know that you want to help in any way you can. Do this for Roman and all kids fighting the fight of their lives. I will keep updating this to help AJ's dad feel he is doing everything he can in his son's honor and to help spread childhood cancer awareness. Please everyone be safe with all the storms out there. God, please keep blessing our Roman and all kids fighting for their lives. And all of the angels who have already earned their wings into heaven. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|June 1, 2008
Hello to our family, friends and new friends! Last night, we got to see our beautiful daughter graduate from preschool. She was so excited about the getting dressed up! The one pic is of Sher and her buddy Macy. The other is Macy, Chloe and Sher. All the girls looked absolutely darling and the boys were just so cute. It was a great night for the school, the church, the parents, the teachers and the kids. Each class performed 2 songs each. Sheridan was a big ham and boy does our daughter have some moves...she took the itsy bitsy spider song to a whole new level!!! Miss Suzanne and Pastor Edwards, Miss Terri and Miss Keri, we want to thank all of you again for such an outstanding job well done with our children. All of you are so very special to us. Sheridan will miss all of you. Thanks again for making her school year with you such a great one. And Sheridan...Mommy and Daddy are so proud of you. We love you and cannot believe you are about to enter kindergarten in the fall. Time sure does fly by so very fast. We know you are going to do an amazing job in kindergarten. We love you and Roman more than words can describe. And, to all of you, please sign the childhood cancer petition if you have not done so already. We need many many more signatures. And, this is specifically for my childhood friend Kim Caine...I got your beautiful card and note. Please send me an email or a phone number so we can talk more and catch up. It was very good to hear from you. And, one bit of good news...my niece Kathleen (age13) (my sister Coleen's daughter) won 2 scholarships for her 8th grade year in the fall at St. Dominic. She also had perfect attendance and made honor roll. We are very proud of her and her hard work. She deserves the scholarships; she has worked very hard in order to recieve them. We love you Kathleen and are very proud of you...keep up the great work!!! On that note, I will end tonight with this...God, thank you for letting us enjoy our daughter's graduation last night. For letting us embrace the moment without fear or worry for Roman. God, thank you for the gift of family, friends and for good times to come. God, please keep blessing our Roman and all kids fighting for their lives and for all of the angels who have already earned their wings into heaven. Love to all of you! Enjoy the weekend! Enjoy the pics! Jody, Mike, Sheridan and Roman Fariello:)
|May 30, 2008
Hello to our family, friends and new friends! It is with every single prayer that you have sent Roman's way and every single email and carepage message we get to inform all of you that the scan was CLEAR....yes, I said CLEAR, NOTHING WAS THERE AT ALL TODAY!!! THANK YOU GOD!!! Thanks to all of you praying so hard for Roman. Roman did not get put under for today's scan either. He was such a big strong and brave boy, he watched The Wiggles and laid still for about 10 minutes or so until the images were taken. I cannot stress to all of you the RELIEF Mike and I felt. I cried the biggest sigh of relief ever!!! Mike and I are so blessed to have such a HUGE support system in all of you. We feed off of your strength. It is amazing how all your emails and carepage messages of hope and prayer really helps us. You will never know how much. Now, we can go tonight to see our beautiful daughter Sheridan graduate from preschool with her buddies and cry tears of joy for her and not tears of worry anymore. We love all of you so much. Thanks again for being there for our family. Have a great weekend! I know we will now for sure!!! God, thank you for keeping our Roman safe in your hands. God, please keep blessing our Roman and all kids fighting for their lives and for the angels who have earned their wings already into heaven: Love to all of you! Jody, Mike, Sheridan and RomanFariello:)
|May 29, 2008
Hello to our family, friends and new friends! First of all, I want to let you all know that your messages of hope and support are just a godsend for all of us. Dr. Wagner just called and talked to me. He feels it is neccessary to do another scan tomorrow of an area that is termed the GE junction (gastro-esophageal junction). Basically at the bottom of the esophagus where it meets up with the intestine. He said the area is so tiny. He also said that a junior doc read Roman's scans today because Dr. Gelfand was on vacation. Dr. Gelfand has read every single one of Roman's scans since diagnosis and he is the very best there is. He is aware of Roman's scans today, and he will view them all together tomorrow after the scan is done to compare, even on vacation. Dr. Wagner's opinion is he thinks it is nothing and that it is something technical on their end of things with how the image breaks up and overlays, sometimes there can be "glowing" where they have overlapped. Dr. Wagner also said that 1 out of about 20 scans come back having to do the third day. He also told me that he is not really concerned with it because of how small it is, and that Roman is not glowing anywhere else like in his skull, his orginal tumor site, or his arms and legs. Best case scenario for us tomorrow is that this tiny area is just gone on the scan all together. Another scenario is that it is still glowing just like today and being same size, plan of action would be we would do another scan in a month. The worse case scenario being that this area has gotten even bigger than today and is still glowing just as much. Then, Dr. Wagner said "we would discuss what plan of action we should take then". With all of that being said...I am still very scared. I am not dealing with this news today well at all. I am supposed to be enjoying the fact that our daughter gets to graduate from preschool tomorrow night and that today was her last day of preschool...instead, my mind, my thoughts, my stomach is consumed with $#@! cancer!!!! I HATE it. I HATE ALL of this. I HATE that we have to worry about this. And, to remind everyone...if you have not signed the childhood cancer petition yet........with Roman today... RIGHT NOW THERE IS NO MORE BETTER TIME TO DO SO. Please, I beg all of you, pray for Roman that this area is nothing and goes away by tomorrow. I will post as soon as I get results from the scan. We have to be there at 9:45. God, please hear me...keep blessing our Roman and keep him safe in your hands. With hope...Jody, Mike, Sheridan and Roman Fariello:(
|May 29, 2008
Hello to our family, friends and new friends! It is with the absolute worse kind of indescribable fear that I have to let all of you know Roman has to have another MIBG Scan tomorrow. I am just numb right now. There is usually 3 days to an MIBG Scan. The first day is the actual injection of the nuclear med. The second day is the actual scan. Like Roman had today. And the third day is for them to take a better look at apparantly something that has caught their eye, enough to warrant a third day. Roman has NEVER had to have the third day of the scan, we usually know results the same day. Roman also had his labs drawn today. His blood numbers looks great and the Triglycerides are at 214, only up 2 from last month at 212. And right now, those numbers are the least of our worries. I of course immediately sobbed, fearing the worst. I know my husband is pretending to be strong, but I know he is feeling the same fear I am. I am just so scared. My stomach has already been nervous this morning just with the scan itself. Now, I can honestly say that it is totally upset and in the worse kind of knots. I really honest to God don't know what else to say... Other than please pray the very hardest you have EVER prayed before for our Roman. We have to be there at 9:45 tomorrow. Dear God, please if you can hear me, please keep blessing our Roman. With hope...Jody, Mike, Sheridan and Roman Fariello:(
|May 28, 2008
Hello to our family, friends and new friends! Roman went today for his MIBG injection. He did absolutely amazing!!! They took us right back even though we were about 40 minutes early. The tech had everything ready to go for us. Roman was a real trooper and laid down on the tables for us. Gave up his hand and did not move or squirm at all! They put the needle right in and it took about 3 to 4 minutes for the medicine to go in. Then, Roman swallowed his thyroid protectant for the scan tomorrow. We were in and out of there in record time. We have to be there by 7:30 in the morning for the MIBG Scan. This is the most important scan of all. It will hopefully, God willing, NOT show any cancer ANYWHERE!!!!!!! Mike is going with me and Mom is actually spending the night tonight because we have to leave here in the morning before the birds even wake up. They will also be taking some blood while Roman is under for his labs. Since the scan is so early, I am very hopeful we will get results sometime tomorrow, as well as his blood results and counts. As soon as I do, I will send them.
Now, onto some other info...first of all, I have had many of you ask about Lauren "our angel". I am very happy to let all of you know that she and Joey are doing great overseas. Lauren and I instant message all the time and we are always in contact with each other. She is still a very HUGE part of our family and Roman's journey. I don't really post anything about her and Joey because they are happy, and enjoying their newlywed lives together. But, please know everyone, Lauren is and will ALWAYS be in our lives, even though we are so very far apart. Lauren, we love you and miss you very much!!!
Also, I want to take this time to thank alot of you who have signed the cancer petition. As I said before, if you are a Roman supporter, than you are affected by childhood cancer. PLEASE, PLEASE go to This website
and sign your name and talk about Roman if you want to. All it takes is a few seconds to do this. And, alot of you have done so and I truly thank you for supporting this cause driven by a Dad who lost his son. If you don't want to talk about Roman then don't... just sign your name, PLEASE.
We also have a little graduate in our house...Sher's last day of preschool is tomorrow. She will then graduate on Friday night at 7:00. I will take plenty of pics of course. We are so very proud of her. It has been a rough year on her at times with Roman but the school has been a such a safe haven for her. She is going to miss the school and her teachers Miss Terri and Miss Keri. Miss Suzanne and Pastor Edwards, again thank you so much for opening your hearts to our family. And, be on the lookout for Roman to be coming not this school year but next school year.
I also wanted to let all of you know that my niece, Michelle Mahoney (my brother Michael's daughter), is Valedictorian at Clark Montessori. Her pic is now running on the 2008 graduates commercial on channel 5. Michelle, we want you to know we are very proud of you! Congratulations on such an amazing honor!
And, I guess that is it for today. I will post with results tomorrow sometime hopefully. For now, please please keep Roman in your prayers tomorrow. It is a major scan that scares us. In the morning, say a prayer for Roman. God, please keep blessing our Roman and all kids fighting for their lives. And, for all the families with kids in heaven already. Thanks for your support and prayers. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|May 23, 2008
Hello to our family, friends and new friends! A real quick update on something I should have posted sooner. On Roman's Carepage, from his "carepage family", we have recieved numerous loving thoughts and well wishes. And even more times than we should we get very sad news of a child relapsing or a child who has earned their wings into heaven. My dear friend Debra sent this to all of their Corey Nickell supporters. I am just copying it for all our Roman supporters... I also need to ask EVERYONE to sign this petition to raise awareness for childhood cancer and the funds to find a cure. After you sign make sure you email this to ALL of your friends, family and even foes. It is so important to get the word out there. If you have time please visit care page: AJsspace. This child has passed away but his father is on a mission to help ALL children with cancer. He started this petition. Please read his powerful words. THEN GO TO: http://www.thepetitionsite.com/1/CureChildhoodCancer Again, as all of you know the importance of this kind of petition. As a country, we spend way more money on going to space then we do on childhood cancer research. Please, take a minute to sign. As all of you who support Roman, you all have been affected by childhood cancer. Please have a safe and fun weekend with your family and friends! God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|May 21, 2008
Hello to our family, friends and new friends! Hope all of you are doing well. We had a great night tonight. Our sponsors from the Make A wish foundation came to meet us and talk to us about Roman and Sheridan's wish. I say both names because as all of you know, this EVIL cancer did not just happen to Roman only...it happened to Sheridan too affecting her in a different way. Our sponsors were really nice and they are married with 2 healthy kids. They brought Sheridan a Hello Kitty coloring book and some washable markers. They brought Roman some outside chalk, a big ball with doggies all over it and a Wiggle cd. The kids of course loved their gifts:) Our sponsors said they get such an overwhelming feeling of joy when they help out a family like ours. Boy, do we need more people like them in our world today! You can truly see in their hearts that they are so willing to make Roman and Sheridan smile and be happy. They are going to really push for things to start happening rather quickly for our wish. I still want to keep it a secret until I know for sure it will be happening for us. As soon as I get word that it has been granted, I will share all of the details with everyone. Roman has just 3 more days for this cycle of chemo (accutane) to be done. I will update again when I hear something about our wish. Until then, we hope everyone has a wonderful holiday weekend. And, if anyone watched American Idol tonight, George Michael sang the most beautiful song he sang in the late 80's early 90's towards the end of tonights show ...one of the lines in the song really hit me..."maybe we should all be praying for time". I could not have said it any better than that. Enjoy your TIME this weekend with family and friends. It is so very precious. You can rest assure we will be enjoying our time; every single moment. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you and thanks for your prayers and support. It keeps us going:) Jody, Mike, Sheridan and Roman Fariello:)
|May 18, 2008
Hello to our family, friends and new friends! As you can see by the pics I sent, our visit with the Nickells was a good one. The kids had a blast together and it was so good to see them just playing and being kids. Not in a hospital, not in a clinic, not passing in between scans, but a real play time visit with one another. Roman really at first did not know what to do because Corey was infringing upon his Sissy...and Roman really was wondering "what's going on...she's my sissy!" The 3 kids had so much fun that Corey did not want to leave. He saw that we literally have ToysRUs in our basement. Just chaos down there. But the kids love it and that's all that matters. Jim and Debra, we have so much fun with you. All of us NEEDED that day together. And, the best thing is that we can have even more days like that from now on. Mike and I are blessed to have Jim and Debra to walk down our sons cancer paths together. We love you and thank you for a great day yesterday.
On Monday, Roman has speech therapy in the afternoon. On Wed. evening, our sponsors from the Make A Wish foundation are coming to the house to meet us. At first, some of you know that Mike and I were against this for Roman. They tell you about it a week after diagnosis. The LAST thing on my mind back then was hearing that Roman gets a wish. Mike and I, like alot of you, at first thought it was just for dying children. And so back then our answer was NO because Roman was NOT dying. We felt there were more kids that deserved a wish more so than Roman for way worse circumstances. As we found out later on, the foundation deals with very ill kids, dying kids and kids with cancer like Roman. Kids who are still battling and always will be battling their disease. Its for kids who have fought with everything in them, like Roman. And, since the required wish age is 2 and a half, I felt Roman was extremely deserving of a wish now. Not only Roman, but Sheridan as well. For the both of them and what they both have had to endure. So, I will fill all of you in on what our wish is and the details and if it gets granted when I know more about it. I guess that is it for now. Please keep praying for the Gruber family, the Houston family and the Bartels family. Thank you God for the gift of the Nickell family and for our day yesterday. God, please keep blessing our Roman,Corey and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|May 15, 2008
Hello to our family, friends and new friends! It is with all of your prayers and support that I get to tell all of you that both Roman and Corey's Cat Scans were clear with no new "NOTHING" found. Just the results that both of our families were hoping for. Roman did exceptionally well today from getting vitals to drinking his contrast to getting his IV in his hand to waking right up after the scan wanting to eat and drink. He is OUR CANCER WARRIOR! Both boys did awesome today. I know I speak for the Nickell family as well, but really your prayers and support means all the world to us and more. These scan and test days are so scary to us, especially after the news we got yesterday. So, now Roman will be on his oral chemo for the rest of theis week and then next also. Then we have 2 weeks off. On the 28th, Roman has his MIBG injection. The 29th his MIBG Scan. That is the scan specifically for Neuroblastoma where it shows any disease at all in the body. A very important scan to us. But with the Cat Scan being good, that helps with our nerves about the MIBG Scan a bit. I am exhausted and its been a long day. I will get some pics this weekend and send them out to all of you over the weekend sometime. Again, thank you so much for all of your kind emails of encouragement and faith and hope. We will NEVER lose that as long as we have all of you supporting us thru Roman's cancer journey. God, thank you for keeping Roman and Corey in your hands for these scans today. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|May 14, 2008
Hello to our family, friends and new friends! Today, is one of the most hardest days of being a cancer Mom with a son who has a cancer. Those shoes again, (that I sent out on Mother's Day), these are the shoes that HURT me so right now...my heart is even more sad tonight. As I sent out the update earlier about Victoria, I got a reply back from Stacey Gruber. Back when Roman had radiation treatments, we met Stacey and her husband Mike and their adorable son Joey. Joey was battling a brain tumor. With even more sadness to report today, Joey too had earned his wings into heaven on April 30th, just 2 weeks ago. I just sobbed at the computer. Just knowing that we met both of these families at the same time back in January for radiation, and seeing them, talking to them and hugging them, now knowing that they both lost their beautiful children. My heart is full with grief and anger. Stacey Gruber, Joey's mommy is on my Roman Update List and she gets and reads every update. Please anyone who wants to send Stacey, husband Mike and family words of support and love, please send them to me and I will forward them to Stacey. Stacey please know our hearts are filled tonight with sadness of Joey being gone from you and Mike and your family. Please take some comfort from us that Joey will never be forgotten in our household. And, that you can trust in God that Joey is pain free now and safe.
I wasn't going to share what I am about to share with all of you...tonight Roman had the biggest "rage episode", "out of body experience", downright violent behavior with swinging and kicking etc. I picked him up tonight and held him tight just so he would NOT hurt himself on anything. It was that bad. Roman has been on the accutane since Sunday. So, we know it is medicine induced rage. I am telling you this because after hearing about Victoria, then Roman had his "breakdown", then I got my email from Stacey and here I am doing an update. It is therapy for me to do updates. I just can't believe that all of this happened in 1 horrible day.Of course then I start thinking badly and start losing my strength. What else am I suppose to do when all we are surrounded by is death! Not even death of an older person who has lived a full life. DEATH with kids. Kids not even 5 years old yet!!! Not even started school yet. I am just so angry. I am just so sad I cannot even think about how the Houston family and the Gruber family will go on. Today, is a very hard day for me as cancer mom. Hard because 2 kids that we have met, are gone now. And the guilt somehow creeps its way in there for me because my son is still alive and here with us and theirs is not. It's those shoes again. My cancer shoes. If you have never worn them, consider yourself very blessed. My shoes really hurt at times when in reality and clear to everyone on the outside, they should'nt...but they DO. The pics I sent of course are of Roman with Joey and Roman with Victoria. Look closely...Roman is surrounded by ANGELS. Please God, keep the Gruber family and the Houston family in your hands for the comfort and strength they need to survive. And God, PLEASE keep blessing our Roman and all kids fighting for their lives. I will post with Cat Scan results hopefully tomorrow evening. Just not a good day today at all:( God Bless! Jody, Mike, Sheridan and Roman Fariello:(
|May 14, 2008
Hello to our family, friends and new friends! It is with extreme sadness and a very heavy heart that I deliver this news to everyone...Victoria Love Houston earned her angel wings into heaven this morning at 6:00am. I cannot express how deeply sad and how mad I am right now at the same time. Neuroblastoma yet again takes another very young life. A life that we got to meet in person and impacted us greatly. Please please all of my Roman supporters out there, go to www.carepages.com and type in VictoriaLoveHouston, no spaces and just type it in just like that...leave them a message of support and let them know that Roman's family sent you. I cannot even imagine how they must be feeling right now. It really hits home knowing that we met this precious little girl in person during radiation treatments. Knowing that her symptoms were just like Roman's with the eyes. I am just so sad. I cannot even tell you or describe to you how I am feeling right now. Prayers for the Houston Family please. Prayers for Roman and Corey's Cat Scans tomorrow. This disease is just pure EVIL and I hate it with everything in me. Please again, go to Victoria's page and send them strength and prayers thru your words. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:(
|May 13, 2008
Hello to our family, friends and new friends! Well, it is the story of our lives...it is the way it goes for the Fariellos...the scheduler called at 9:00am this morning, and told me that Roman's Cat Scan was canceled because there was no radiologist available this afternoon. So, whoever scheduled Roman for this today really messed things up...or, the radiologist just called in sick. Whatever the case may be, Roman's Cat Scan will NOT be happening today. It is rescheduled for this Thursday. We have to arrive at 1:00. The coincidence of this time and day is that our dear friends Jim and Debra Nickell with their son Corey, will be arriving at 12:30 for his Cat Scan also. So, we will be waiting and spending the day in radiology together. So, those of you who were praying for Roman's Cat Scan to show NOTHING, please pray that Corey's Cat Scan shows NOTHING too. As all of you know for Mike and I, the waiting for these scans is just nerve wracking. Now that Roman's has been canceled again, we have to wait even longer. I just want it over and done with. Roman is actually understanding things alot more now that he's grown up some with all of this. I tell him what's going to happen at the hospital, and he knows what will happen. He is truly an amazing kid! Iwill update when I have results on Thursday. Hopefully, we will get them Thursday sometime...however after today, I am not so sure. Please pray for Roman and Corey on Thursday that they have clear Cat Scans. God, please keep blessing our Roman and all kids fighting for their lives. God, please make the time go by fast for the Nickell's and for us on Thursday. Love to all of you and please keep those prayers coming. We need them. God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|May 11, 2008
Hello to our family, friends and new friends! Happy Mother's Day to all of our Roman supporters who are Moms:) It is a very special mother's day for me... because one year ago my mothers day was spent coming home from a round of chemo right after Roman's diagnosis. This year, we will spend it at Mom and Dad's with Uncle Steve, Uncle Andy, Aunt Jenn, and cousin Ian. Ordering in LaRosas and just spending precious time together. We have ALOT of time to make up for. Yesterday, we went to my sister Coleen's to celebrate my niece Kathleen's birthday. It was a great time for me, Sheridan and Roman. I had the chance to sit with my sisters and just talk while the kids played and ran around. It was a beautiful day outside too. Coleen surprised Maureen and I with beautiful flowers for Mothers Day. Again, thank you Coleenie for yesterday and for my flowers. You are so sweet!
When I finally checked email last night my dear friend and fellow NB mom, Debra Nickel, sent her
supporters something so beautiful, I had to share it with our Roman supporters. Here it is...
"I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.
"I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.
"To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.
"I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.
"No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.
"I am a woman who has a child with cancer. I will forever walk in these shoes."
- Author unknown
Thank you Debra for sharing that. Boy, we know our shoes ache daily don't we...
I felt it fit perfect for today being Mothers Day. Keep those prayers coming for Roman. Cat Scan is on Tuesday late afternoon. Speech Therapy is tomorrow afternoon. Happy Mother's Day! God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|May 8, 2008
Hello to our family, friends and new friends! Today, Roman went to his clinic appt. with Dr. Wagner at 11:30. Roman's diarrhea has slowed down alot, thank goodness. Dr. Wagner was very pleased with Roman and with how well he is doing. Roman is good to go to start his 4th cycle of oral chemo on this Sunday. His lab results from today have never looked better. White count 8.9...Hemoglobin 12.3...Platelets 382...ANC is 4270, Triglycerides 212 down from 283(hooray) and Urine was completely normal with no blood or protein. So, Roman is doing remarkably well:) Getting the blood today out of Roman, was NOT a pleasant experience. It took 3 nurses to get blood. The first nurse blew out a vein so as you all know, Roman by this point was screaming his head off...and then the second try really did not go any smoother and took even longer trying than the first time. After about 25 minutes and alot of screaming and tears, and sweating...they finally got blood. And, I almost had to get a bit MEAN with one of the nurses because during the second try, they were rolling the needle around in the back of his hand and he of course was kicking...she said "Now, your gonna have to stop kicking"...all the while I am thinking to myself..."Now I am gonna have to just lay you out flat right here, do NOT tell my son to stop kicking when he is in so much obvious pain"...I wanted to go off on her but at that point is when they got blood. THAT nurse was lucky today to not feel the wrath of Roman's Mommy!!! Not a good day at clinc today...Nurse Kim, we missed you today! Anyway, Roman is doing well and that is ALL that matters. So well, indeed I asked Dr. Wagner when the "isolation status" could be lifted. He said "Start going out and start doing what you want to do". That does not mean that we still do not have to be very careful, but that certainly does not mean that we have to hibernate like we have been doing either. So, great news there for all of us as a family. We can go out to eat and wherever we want to go and not WORRY as much as we have been. So, I wanted to get these results to you. All is good:) Roman's Cat Scan is scheduled for Tuesday. We have to be in radiology at 1:45. So, no telling exactly what time the scan will take place. I have more to share with all of you, but it will have to wait 'til later on tonight for a second Roman Update. Until later on...God, please keep blessing our Roman and all kids fighting for their lives. Thanks to all of you for your prayers! Jody, Mike, Sheridan and Roman Fariello:)
|May 6, 2008
Hello to our family, friends and new friends! Roman now has his clinc appt. with Dr. Wagner this Thursday at 11:30. As for the Cat Scan...that has been moved 'til next Tuesday and we have to be there at 1:45. I will keep all of you posted as to how Roman is feeling. Right now, he is having "episodes" in between playing. He is still eating and drinking. No fever. He is getting confused as to his being sick...he wants to puke in the bucket thinking he is sick and then he explodes in his diaper. Poor little guy! I just hope and pray that this is something that will pass very quickly and NOT a sign of any infection or God forbid anything else going on with him. Something like this with a normal kid is nothing to worry about...something like this with Roman could mean a number of things. That's why I am glad he will be getting labs drawn on Thursday so we can find out what his ANC is and his white blood count etc. It will help me out knowing what those numbers are so I can breathe a bit easier. I also want to thank Stephanie for picking up Sheridan today and still willing to keep her after school so Mom could have an off day today. Both Macy and Sheridan were looking forward to playing together after school today. Thanks Stephanie! That's all I have for now. Please keep those prayers coming for Roman so that his tummy settles down. And, that nothing else in brewing. God please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|May 6, 2008
Hello to our family, friends and new friends! Well, change of plans for today...Roman started with some runny poopies yesterday. So, this morning I called our coordinator Polly, and she checked with Dr. Wagner and he did NOT want Roman coming today for his clinic appt. or for his Cat Scan. So, I have no time or day for a reschedule for the Cat Scan. However, I do know that Dr. Wagner must see Roman on Thursday so he can get started on his next cycle of oral chemo on Sunday. We need to get the script and Roman has to have a "checkup" before he starts the next cycle. So, as soon as our coordinator calls me with a new day and time for the Cat Scan, I will do another update. I am not sure if Roman has a bug or something, or if he just ate something that did not agree with him. He is not running a fever or puking, just the poopies. In any event, we are keeping an eye on him and making sure he does not get dehydrated or anything. Keep those prayers coming for Roman. I will update as soon as I know something. God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|May 4, 2008
Hello to our family, friends and new friends! Well, we had a pretty good weekend here at the Fariello household. Saturday, we took the kids to Bed Bath & Beyond and out for a late dinner to a local place up the street from us. We probably should NOT be taking Roman anywhere, but we needed a few things there and besides, the kids enjoyed being out with us and being OUT of the house! Then today, we went to Derney and Duppy's house. The pics I took were of Roman, Sheridan and cousin Ian. FINALLY, the kids got to play outside together because it was nice out. It has been way too long since Roman and Sheridan has played with their baby cousin Ian. The kids has a blast today together! Uncle Steve was there and also Uncle Andy (Ian's daddy). It felt good to see them playing like "normal" kids playing. To remind all of you that Roman has a Cat Scan of his head and abdomin on Tuesday at 3:00. We will already be there because Roman has a clinic appt. with Dr.Wagner at 11:00. So, it will be a very long day for Roman. Mom will be going with me so I will not be alone. Stephanie, Macy's mommy, will be taking care of Sheridan for us getting her to school and keeping her after until Mike picks her up after work. Sheridan is all excited about seeing their "little doggy" and playing at Macy's! So, please say some prayers for Roman on Tuesday that the scan shows NOTHING. I am not sure when I will have results since the scan is so late in the afternoon. I will send them as soon as I get them. Also, on a sad note, neuroblastoma has taken yet another child away from his parents and family. Cooper Riley Proscia earned his angel wings yesterday afternoon. He battled this EVIL for 3 years. He really had a rough road with this evil cancer. Please keep the Proscia family in your prayers with the long road they have ahead of them without their adorable son. I always get scared when I get updates on kids that I know are dying. I always seem to "go there" and automatically think of the absolute worse case scenario with Roman. Then, I quickly gather myself and my thoughts and do my best to try to suppress those feelings. How could I not "go there" since all these kids have the same disease that Roman has. I gotta tell you it's very difficult and scares the 'you know what' out of me. All the while my heart just aches for these parents who do not have their kids anymore physically with them. Holding them. Hugging them. Kissing them. This EVIL cancer has got to be stopped. There must be a "cure" out there somewhere. Please, keep Roman in your prayers on Tuesday. I will of course be a nervous wreck on the inside... but on the outside, I will be putting on a strong front for Roman. I must be strong for him. Thanks for all of you for your love and support. God, please keep blessing our Roman and all kids fighting for their lives. God, please give the Proscia family the peace of knowing Cooper is in your hands. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 30, 2008
Hello to our family, friends and new friends! Hope everyone is doing well. Roman is doing just fine. He had his 2nd speech therapy session yesterday afternoon. He really likes his therapist, Miss Tina, and he cried yesterday when it was time for her to pack up her toys and leave. I am so happy he enjoys his time with her. She will be here with us until October for Roman's 3rd birthday, so she has many more sessions to go with Roman. Roman will be seen twice a month or more or less if directed by Miss Tina. He is napping right now so I thought I would give all of you a quick update. We are enjoying our "break week" with no meds to give. Just a "normal" week for us with school and Derney coming to hang out with Roman. Prayers are still needed for Victoria Love Houston, John Eric Bartels and Coleman Larson. Also, Corey Nickell is officially done with his final round of oral chemo and done with this long protocol. Hooray for Corey! If anyone wants to send Corey and his Mommy and Daddy (Debra and Jim) a "way to go Corey" message, his carepage name is CoreyNickell. Just 2 reminders: if you have not sent me your thoughts on Roman's diagnosis day, please send them to me when you can....and if you have not had time to or whatever please check out and read my "book" on RescueRoman.org for his 1 year anniversary. God, please keep blessing our Roman and all kids fighting for their lives. Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 27, 2008
Hello to our family, friends and new friends! I hope everyone has had a great weekend. Believe it or not, we at the Fariello household have had a good weekend. Aside from late Thursday night wheh Mike uploaded my book and song, he had not read any of it until then. He skimmed thru to the thank you page at the end. And, I looked over at him and a tear was rolling down his cheek. That was an emotional moment between us. Then on Friday, it was just like any other day. We really did not break down, and we probably did something that we so desperately NEEDED to do...we took the kids to Big Boy on Friday night. It was much needed to feel NORMAL by all 4 of us. And, we went there when there was hardly anyone there. We ate a late dinner. It felt so good to have all 4 of us eating at a booth together. THAT has not happened in a very long time. And, what better way to celebrate Roman and the past year then going out to dinner as a family doing a normal thing. And, today, we took the kids to my old boss' house from US Financial. Russell and his wife Angel live in Fairfield and we drove out to pick up a doll that Angel made for Sheridan. This is the second doll, the first doll she made got puked on earlier this year. So, Angel, we appreciate you making Sheridan another "Me doll", she LOVES it! And, it felt good to see Russell and Angel. We hung out in the driveway so Roman could stay outside. Russell and Angel, we truly enjoyed our visit today with you. We miss you both. Angel you are an "angel" for making another doll for Sheridan. We cannot thank you enough. After we left there...we took the kids out to eat AGAIN to Skyline closer to our house. It felt good again to be out as family and just eating together. Now we are home and the kids are outside playing. I wanted to get on here to let all of you know that we did just fine with the anniversary weekend here. Roman also ended his 3rd cycle of oral chemo yesterday. 3 down...3 more to go. We have 2 weeks off now, but inbetween we have a Cat Scan on the 6th at 3:00. The MIBG will be a week or two after that.
My heart is heavy today though because of a little guy we have been praying for...John Eric Bartels. If you recall he has what Roman has and went into transplant with a bit of disease in his pelvis and came out with another tumor that has been growing very quickly now for the past month. I read his Mommy's latest update. John Eric's mommy and daddy had to do the unthinkable for their child...plan his funeral. I about just lost it and my heart sank right into my gut. Hospice also came and set up everything for John Eric. Mike and I feel just sick inside knowing that the Bartels are going down that path that I was talking about in my book...you think everything is going accordingly only to be completely cut off at your knees. I cannot even imagine what they must be feeling. Mike said at dinner tonight sitting in Skyline..."I don't want anything to end THIS" ...this meaning our family unit as a 4 member family. We just can't even think about that. So, please, keep John Eric, his parents and his grandparents and family in your thoughts this weekend. They are not sure how much time he has left with his Mommy and Daddy, but the time he does have left I can assure you will be filled all the love he could possibly get from two of the most loving parents in the world. I also am asking that you please pray for a little guy named Coleman Larson. He is getting test results on Monday after his transplant ended just 2 weeks ago. The preliminary results were not completely all back yet. So, they are left hanging until tomorrow when the docs get together to discuss the scans and their findings. I also want to ask that you pray for Corey Nickell...he just started his last and final cycle of oral chemo. Hooray for Corey!!!! Almost there my little fireman! Almost done with protocol. Keep on fighting Corey!
God, please keep blessing our Roman and all kids fighting for their lives. Thanks to all of you for your loving support and prayers, not just for Roman but for all of his cancer "friends" both known and unknown in the cancer world. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 23, 2008
Hello to our family, friends and new friends! Today is Wednesday. Last year, our nightmare began on Wednesday the 25th. But it's not actually the anniversary just yet. I have completed my anniversary book as a tribute to Roman and Sheridan. It will be posted on RescueRoman.org for Friday the 25th. It will be in PDF format so that you may print it all off to read it and keep it. There is also a song that will be played while you are reading it online. The song is of great significance because it was the song that my Mom wanted me to sing at her funeral. Obviously I could not handle doing that, so I recorded my singing on a tape and it was played at the funeral home for her visitation. The song is just beautiful and is meant for a parent to be singing to their kids. As I think back to that week Roman got diagnosed, that weekend before, Lauren came to watch the kids for us so that we could go to our friend Debbie's surprize birthday party. That happened on Saturday. Sunday, I really don't recall what we were doing. Probably over at Mom and Dad's house for our usual Sunday get together. Monday, I was sort of anxious because on Tuesday I knew we had another visit with Dr. Motley and that's when he dicided to send Roman for a Cat Scan. The swelling in Roman's eye obviously did not go down. They wanted to do it that same day, but since Roman ate food, we had to wait for the following day, Wednesday 25th. His scan was I believe at 1:00. That day will be a day I will never ever forget. And, for as long as I live, it will always haunt me being played over and over in my mind. And, this week, is very emotional. Not just for Roman's 1 year anniversary, but because I have met so many families online and in person, who's lives were changed just like ours. Some kids have gone on and earned their wings into heaven. Some kids are about to take that hoirrible road of their tiny bodies starting to decline. Some kids, like Roman, are following protocol, and doing what is expected. Some kids, are NED (no evidence of disease) and have been for such a short time or a very long time. And, then some kids have relapsed and their fear is unbearable and unimaginable. At right after transplant,during oral chemo,during testing and scans, and in some cases, 9 years later of everything being fine and NED... All of these things are why I am very emotional. This cancer is pure EVIL. There are no garauntees with it. It comes back ever so quietly, and by the time it is discovered again, it has spread far worse than before. Roman is doing just fine. He is a walking miracle. Mike and I are ever so reminded everyday...that life can change all over again. This fear, we will have for the rest of our lives. The relapse fear. The scans and testing fear. Every little thing Roman will complain about at all, any pain that he may be feeling and tell us about it, we are going to just freak out and be worried. And rightfully so. With neuroblastoma, it is quiet and then it wreaks loud havoc on a childs body. This week is a huge milestone for Roman. He has battled so much and for so long and still battling. And will always be battling this evil I call neuroblastoma for the rest of his life. I only pray that Roman continues to keep the cancer at bay for ever! I have to keep the faith and be positive for myself and the kids or I will go insane. So, to remind all of you to please send in your thoughts and feelings about Roman and Sheridan so they get to read them some day. And, a few prayer requests...Victoria Houston has taken a turn for the worse, please keep them in your prayers. John Eric Bartels with his mommy and daddy and his relapse after transplant. And we lost a little guy named Cody Lee who we follow on carepages. He had Ewings Sarcoma. He was 12. Please keep this family in your prayers. And so many others...God, please keep blessing our Roman and all kids fighting for their lives. Thanks for letting me be in the moment at this time, during this rough anniversary week. Love to you! Jody, Mike, Sheridan and Roman Fariello:)
|April 17, 2008
Hello to our family, friends and new friends! Well, it would not be warmer weather out without a kid falling outside while playing...Roman fell down today running on the driveway to meet Derney. Scraped his arm and his knee. Then yesterday, he fell going up the deck steps and got a bloody lip and scraped his chin at the bottom. As bad as it is for Roman to be upset about falling...I on the other hand, am loving the sound of him crying because of him falling...that means he is being NORMAL...doing NORMAL outside things like falling. The weather has been so nice for him that he wants to be out there whenever he can. So, Derney cleaned up the water table and away he played for hours. I know people will enjoy seeing thse pics. Not much really to report here. Roman has dry skin on his mouth and face from the medicine, but all in all doing fine. I do have a prayer request...John Eric Bartels is the little guy I told you about that after his transplant, they found another tumor in his pelvis. He's not real well right now and back in the hospital for an infection or something. And he is on a pain patch for his pain. Just please say a prayer for his family. Most importantly, his mommy and daddy. And, thank you to the people who have sent me some of the most beautiful words for Roman and Sheridan on the day you found out about Roman's cancer. PLEASE, if you have not done so already, send in your thoughts and words for Roman and Sheridan for his 1 year anniversary. That's all for now. I will update when need be. God, please keep John Eric in the palm of your hands. God, please keep blessing our Roman and all kids fighting for their lives. Love and thanks! Jody, Mike, Sheridan and Roman Fariello:)
|April 14, 2008
Hello to our family, friends and new friends! Hope everyone had a good weekend. We did here. On Saturday, Mike and I met one of his old co-workers and his wife from Carey Digital for dinner. It was great seeing Bill and Lisa. We enjoyed catching up with them for it has been way too long. Mom and Dad were here with the kids to free us up for dinner and some time away. And, then on Sunday...I met up with Debra Nickell (Corey's Mom) and Melissa Melville (Joe's Mom) for lunch at Cracker Barrel. We met around noon time. I so enjoyed being with my fellow neuroblastoma moms. Time went by quickly and before we knew it, we were still there at 7:00pm. Oh my how time flies when your having a great time. So, of course, we stayed for dinner as well. Not too many people can say that they stayed at a restaurant so long that they ate 2 meals there. When all was said and done, I got home by 9:00pm. We talked about everything and anything. Talked about our boys' diagnosis dates since Roman's 1 year anniversary is coming up soon. We talked about living with all the changes we have had to overcome. We talked about death with all of the other kids we follow. We talked about quality of life and all of the what if's. We also talked about husbands, cars, other kids in the family and our own families and how the cancer affected the family as a whole. Just you name it we talked about it. That is why we were there for so long. And of course we cried a bit and laughed a ton more. I love you Debra and Melissa. I am blessed and we all are blessed to have this mom bond that no one else can even comprehend. Thank you both for a great Sunday at Cracker Barrel...next time we will have to take Melissa's advice and meet up for breakfast too:) Love you both! Today, Roman had his first speech therapy session at 3:30. It went really well. Sheridan played upstairs and I left them be alone together to let Roman have all his attention on her. He played with her the entire hour. She also brought a device for hearing with headphones and special tones. This is what she will work with Roman on to prepare him for his hearing test maybe in Sptember or October. Roman will be seen 2 times a month for an hour each time. Thanks to the RescueRoman fund and all of our supporters, these therapy sessions will be paid for. Roman also started his 3rd cycle of oral chemo on Sunday. We had a bit of an issue with getting the drug from Biggs this time because they forgot to order the other part of his dose. Target pharmacy had what we needed so, Roman is taking a different brand name of the same drug. And so the frosting on the spoon begins both morning and night for 14 days. Hopefully, Roman's triglycerides will go down. They were pretty high with the last lab results. So, we have a pretty calm week ahead of us here. Sheridan has a make up snow day on Friday so she will have school 4 days instead of 3 this week. I am still working on my "book" or my "Cancer Mom's Memoirs" for my tribute to honoring Roman's first year anniversary. It is a labor of love that I am very proud of. I cannot wait for all of you to see it and read it. On that note, thanks to all of you for your love, support and prayers for Roman and our family. It means the world to all of us. Don't forget if you have not done so already...please send me your thoughts and feelings on getting Roman's cancer news last year. Love to all of you! God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|April 11, 2008
Hello to our family, friends and new friends! Roman's urine had just a trace of white blood cells in it. Dr. Wagner was not worried about it and said for us not to worry about it either. The main thing they look at while on this medication is the blood in urine and protein in the urine. Neither of which Roman had. So, I wanted to let all of you know that Roman's urine was in fact ok. And Monday at 3:30, Roman will have his first speech therapy session here at home. I am quite sure that it will go pretty well. Say prayers that Roman handles cycle 3 of accutane just as the previous 2. He starts it on Sunday morning. I was looking back at this time last year, and Roman went to see our pediatrician for his 18 month check up and to have his eye looked at. Dr. Michaels referred us to Dr. Motley (Roman's eye doc) to see if there was any eye dammage when he fell on the toy. As I look back at those horrible pics of Roman's eye, we had no idea that a deadly cancer was growing quickly inside his body. I wish I would've known then, what I know now about stage 4 neuroblastoma. But, I do realize that I cannot change anything about what happened back then. All I can do is to continue to move foreward and be positive, have faith and hope and pray to God everyday that Roman's cancer stays away and gone forever. I have a special request from all of you Roman supporters...I am asking you to think back to when you found out about Roman's diagnosis. If you can try to remember the day and time and in a sentence or 2 or longer please explain what you felt inside when you were told of Roman's cancer. Did you cry? Did you get scared right away? Did you worry about Sheridan? Did you worry about how Mike and I were going to be handling things? Were you numb? I want to know your raw feelings and emotions from that time because I want to keep them for Roman and for Sheridan. I am asking that you email them to me so I can print them off or you can mail them to me here at the house. If you need our address, just send me an email. I really want Roman to know how people felt when they were told of his news. I know many of you were told by my friend Anne. So, please, let me know what you talked about with her or how you felt when you hung up with her. I am thanking you in advance for your help in doing this for Roman. I feel since his 1 year anniversary will be on April 25th, this will help tie in things for him from one year ago. When Roman is older and can read what everyone said, he will feel what you felt about him. Thank you all for your love, support and prayers for Roman and our family. We could not have come this far without you. God, please keep blessing our Roman and all kids fighting for their lives. Have a great weekend! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 10, 2008
Hello to our family, friends and new friends! First to start off, I must thank Stephanie, Macy's mommy, for taking Sheridan to school, picking her up and keeping her until Mike was done with work. You really helped me out by doing that for us. And besides, Sheridan LOVES Macy anyway! Thank you Stephanie for freeing up Derney today so that she could go with me and Roman. Now, onto Roman's clinic visit. He did really well with the blood draw. I was not sure how he would do, but he did just fine with it. Cried when the needle first went in, and then he was ok. He is such a big boy, and he amazes me how much he has grown up thru all of this. Every new change that comes with his cancer journey, he accepts without complaining. He really sets a high standard for the rest of us huh? Dr. Wagner was pleased again at how well Roman was doing and looked. The rash on Roman's face, arms, hands and forehead did not alarm Dr. Wagner...could be start of eczema, bathing or just a medicine side effect. Roman also gained 3 pounds this time. He was 29 pounds and now he is 32 pounds. He is growing and growing and eating and eating, just like a boy would. His lab results are as follows: White count 6.3, Hemoglobin 12.1, Platelets 369, ANC 1830 and Triglycerides 283. Yes, that count is very high...but not high enough to stop the meds. Dr. Wagner said 300 is the number that would warrant possibly stopping the accutane. So, we just have to keep a close on the triglyceride levels. His urine had no blood and no protein in it. However, there was a trace of a leukocyte??? something or other that our coordinator is going to talk to Dr. Wagner about tomorrow. Other than that, Roman is feeling great, playing great, eating and drinking great and over all doing very well. Roman starts his 3rd cycle of accutane on Sunday. It will remain at the same dose because of Roman's aggressive episodes and meltdowns. I am so happy that Dr. Wagner agreed not to increase the dose. Remember Roman is only taking half the dose a day that he is suppose to be taking...due to his high triglyceride levels, the previous TMA issue and now due to his behavior changes. The next time for scans will be after this 3rd cycle of accutane as part of the protocol. They will be (I think) some time the week of May 5th. When I know the exact dates I will let you know. This time for scans, Roman will only have a CAT Scan of his head and belly and an MIBG Scan of his whole body. So, 2 days of scans. That will not be as hard on Roman or me. For that, I am grateful. As all of you know from the last time, someone will be going with me for those 2 days. I am quite sure Mom can be with me as long as I have other arrangements for Sheridan and school. So, I will work out all the deatils when I find out exact dates. When I find out about his urine tomorrow, I will send another update letting you know what was found, if anything. I also filled out paperwork today for Roman's Make A Wish. I will let all of you know more about that when I get more details. Until tomorrow, please keep the prayers coming for Roman. He is doing well and it is due to all of your continued support and prayers. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 8, 2008
Hello to our family, friends and new friends! Today, Sheridan had her Mr. Cowpie day at school. A petting farm came and she got to pet some small animals and ride a pony. She LOVED it! The pics I sent are from today and also from Sheridan and Roman playing dress up and eating lunch outside yesterday. Roman has LOVED being outside playing. It feels so good to see him actually get to play and enjoy himself. We have been trying to be good with the sun, but, his ears got a bit of sun on them yesterday. He is really liking his hat and sunglasses. We are going to have to get him more hats. The medicine he takes, he is not suppose to be in the sun...yea right...try telling that to a 2 year old!!! And, I cannot possibly keep him indoors while his sissy gets to go out and play. So, we just have to be careful. Roman goes to clinic on Thursday at 11:30 for his blood draw and urinalysis. Mom is going with me because one of Sheridan's classmates Macy (her Mommy Stephanie) is going to take Sheridan and pick her up for me to free up Mom so she can help me with Roman. Not sure how well it's going to go on Thursday...remember...this will be the first blood draw without his line. Anyway, I am glad Mom is going with me. Roman will begin his 3rd cycle of accutane on Sunday. It is really going fast. I am glad it is. I do have a prayer request. Today, heaven got one more angel among them. I follow a boy named Edward Vizina. His birthday was just yesterday. His Mom felt he was holding on because of his birthday. He turned 13. I know many of our Roman supporters have kids his age or even around his age. I have nieces and nephews around that age and a bit older. Just for a moment, tell your teens and tweens that you love them today and hug them. The bond that Edward and his Mom shared was apparent up until his last breath. I know that she would want you to enjoy every moment with your teens, even the roughest and most challenging times. His death hit me differently because of his age. I can't even comprehend, that up until last September, Edward was a normal young, energetic tween, who was so full of life. And then the bomb dropped...Edward was diagnosed with Glioblastoma, and it took him in a matter of 7 months. Please, say a prayer for his family. Edward is not suffering anymore. That's all I have for now. I will update on Thursday after we get back from Roman's appt. Pray for good lab results and urine results. God, please bless the Vizina family at this time. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|April 4, 2008
Hello to our family, friends and new friends! Just wanted to let all of you know that Roman's next clinic appt. with Dr. Wagner will be next Thursday the 10th at 11:30. This visit will be a urinalysis and a blood draw...without the line! So, I know Roman will handle it fine, but, I am sure it will hurt him and he will have an ouweee!!! And, as much as he has endured thru his cancer journey, a blood draw seems like nothing now. And, Dr. Wagner also discussed the possibility of increasing Roman's dose of accutane 3rd time around. Well, I am going to ask that he NOT increase the dose. Roman's side effects are definitely apparent to us while taking this drug. Like the dry skin on his cheeks and mouth, the headaches, the sleepy times and not so sleepy times and the most horrible is his aggression, his melt downs, his behavior in general. I feel increasing it will make the side effects much more worse than they are. I will plead my concern with Dr.Wagner, and I will let you know if the increase in his medicine will happen or not. Hopefully NOT. Seeing Roman have these "episodes" is just not a good thing for us to see or Sheridan. Roman kicks, screams,throws whatever he is holding across the room and at us, hits his head on the floor and just well, you get the picture. The slightest little thing sets him off and it takes a while for him to "calm" down. That is NOT how Roman acts, even if he is having a "terrible 2 meltdown". So us thinking the first round was terrible 2's or whatever and now seeing it happen again with the second round, I surely don't want the meds increased. Roman is just fine when he is done with his meds for the 2 week recovery period. So, pray that whatever is decided about the meds, will be in Roman's best interest and Sheridan's. I also know most of you remember me talking about Victoria Love Houston, NBStage4 just like Roman. I got an update yesterday, and please pray for her and her family. She either has new tumor growth in her liver or God forbid something else going on with her liver. She is in alot of pain but is still fighting the fight with her family beside her. So, please in your prayers this weekend, pray for Victoria Love Houston and check out her carepage. Also, this morning our community lost 2 heroes in Colerain that went into a house to battle a fire and did not make it back out. One of the heroes was a female captain. Engaged and mother of 2 young daughters. My heart ached for her family this morning, just knowing that she went into that house, not thinking twice about herself and her family and she gave the ultimate sacrifice. Her own life. See, she went into that house thinking she was going to be home with her girls tonight and probably her fiance. Reality check for all of us. Take inventory and just love your kids, your spouses, your families and say a huge thankyou to any hero you know for their sacrifice. Until next week, God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello
|April 2, 2008
Hello to our family, friends and new friends! I wanted to let everyone know that Roman completed his 2nd cycle of oral chemo on Sunday. So we are off this week and next week for a 2 week recovery period. Roman is doing just great right now. Still very much enjoying those baths!!!
Yesterday, we had 3 visitors from the First Steps program here with us. We had the original lady who came out to take Roman's history. We had the lady who is the family coordinator for Roman. And, we had the speech therapist here as well. We had a discussion about Roman's testing that the speech therapist gave him the day before. We also discussed goals for Roman as far as speech and hearing are concerned. First Steps only goes to the age of 3. Roman will be 3 on Oct. 7th. So, we have 6 months that he is allowed to be in the program. Roman's testing showed that he is average and above average in just about all of the areas she was looking at. Except for articulating maybe more words in sentences. Right now, Roman does maybe 3 to 5 word sentences. She said she would work with him on getting more words. Also, some words she noticed when he would put 2 or 3 together, that some of the beginning and ending consonants were missing. Now, she did admit that could be hearing related or that could be age related. There is no way to tell at this time until Roman is speaking way more sentences than he is now. So, all 3 ladies involved with Roman are on board to wait to do another hearing exam when he is closer to age 3 and that will give the speech therapist time to work with him a bit. She will see Roman just 2 times a month for 30 minutes each time. This of course could change if she thinks it is warranted. But with how Roman is doing overall, they told me that they probably could not get him any more time than that. So, all in all, speech therapy will be good for Roman. And, the speech therapist said she would also go with us to the hearing exam to observe Roman in that atmosphere as well. I assured all the ladies that I truly don't think Roman has any issues with hearing or speech. I let them know that as HIS mother, I feel this is all just Roman learning and feel that his speech was very much age appropriate. However, I also told them, that Mike and I did not want in a couple of years to say to ourselves...shoulda, woulda, coulda. Therefore, that is why First Steps are involved with Roman now at our request. Mike and I want to ward off any hearing issues and speech issues for Roman before he goes to preschool and school. The speech therapy is definitely a form of insurance for us and for Roman. We are lucky he was able to get into the program because he is doing so well. Most kids in this program, are far worse off than our Roman. That's all I have for now. God, please bless all the kids who are enrolled in the First Steps program for whatever medical reason. God, please keep blessing our Roman and all kids fighting for their lives. There are far too many kids fighting the fight right now. Love and thanks to all of you for your continued support and prayers for Roman and our family. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)