|
||
| March 29, 2008 Hello to our family, friends and new friends! I hope all of you are having a good weekend. I have one thing to tell all of you and then I need to sort of be "windy" for a bit. First of all, Roman is doing wonderful and we could not be happier with the line out. Life is MUCH easier that we don't have to worry about that line. The speech therapist contacted me and she is suppose to be coming out Monday. Not sure yet of an exact time. It will be very interesting to see what she thinks about Roman and his speech and his hearing. I will let all of you know what happens.
The 2 pics I sent to all of you have real meaning today. They are just simple pics of Sheridan and Roman. Watching a movie on the portable DVD player that Santa brought them. The reason I sent them is because I wanted everyone to see that they are together. They are ALWAYS playing together, dancing, eating, drinking, fighting etc. I can't even imagine Sheridan without Roman or vice versa. I can't even stand the thought. I am feeling rather down today. It started this morning when I opened my email and read someone's carepage update. For those of you who do not know, www.carepages.com is a free service to families of sick family members. Since we have RescueRoman.org, we do not need their services. I follow about maybe 12 kids and their different cancer stories on there. Many have what Roman has. So, one of my kids that I read about all the time, carepage name is johnericbartels, got the most worse news ever. He just completed his transplant a few weeks ago (stage 4 neuroblastoma). He is around Roman's age. And, he had an MIBG scan done and it showed he still glowed in one area in his pelvis. So, Friday, he had surgery to remove the tumor. When the doc went in, they removed that tumor, but found another one the size of a golfball in his bowel. As you can imagine what his parents are feeling right now. I feel it for them. They have no idea what the next plan of action is for John Eric. They do know this...and this is his Mommy's words..."If you were just told the news we just received what would you do? Don't be quick to answer. If you knew your child, who has known nothing but Dr's and "hotels" and blood draws and scans and everything else that goes with this, had the chance to be a little kid, if just for a short time, what would you do? It's not easy is it. I don't want anybody to think that we are turning our back on treatment, because we have not. We just don't know what is next. When we do me and Jay will figure out what is BEST of John Eric to live as a little boy for as long as he can with out pain." Now, I say, welcome to the world of childhood cancer. It's really not fair. I HATE cancer. I wish it would leave every single child ALONE. What these parents are feeling, what they are experiencing, is our worse fear with Roman. These feeling are so real and so raw. These decisions are the most difficult a parent has to make. Because why, because they are FORCED to. I had fear in my mind all day. Fear for the Bartel family. Fear for what is next for them. I get asked ALOT by family, friends and even Mike my husband, why on earth do you read about all those families and get so involved. I can tell you that a HUGE part of me feels better knowing the "what-ifs" because of Roman. I feel I want to know EVERYTHING or at least most everything. I feel that if I can make all of you read my updates, not per say the carepages themselves, at least you are begininng to just barely tap into our cancer world. Until God forbid, you are in our shoes, than you must take our words for it. Take our advice when we give it. I am speaking from an area in my heart and soul that many of you will never get to experience. Today, when I read about John Eric, I immediately thought to myself, that could be Roman. And it hit me like a ton of bricks. Now I know there are alot of you saying to yourself reading this update...But, Jody, it's NOT Roman. He is doing wonderful! And, I say back... he is, you are correct. However, Mike and I are reminded every single day that we breathe, that neuroblastoma is down right EVIL. There are NO gaurantees with this disease. THAT is our reality everyday. John Eric was doing wonderful too up until yesterday. So, see, please bear with me. Remember, you cannot possibly feel what I am feeling, so just let me get it out. Me venting and going on a long windy update is because, well, I just have to. Please, tonight or whenever, go check out his carepage and leave a prayer or a you are not alone message of support. When you pray for Roman, you are praying for ALL kids fighting for their lives. Getting back to the 2 pics I sent to all of you...our reality is that God forbid one day, that togetherness and bond they share would be taken away. I am always hopeful and positive when it comes to Roman. So, I don't want any emails or phone calls questioning my faith in him, our family, or our strength. As I have told all of you before...you are not in our shoes and you don't know how we should be feeling. I just cannot help it when reality reminds me and rears its very ugly head. Just like it did this morning reading about John Eric. I will leave you tonight with what John Eric's Mommy told her supporters to do last night as advice...If your child spills juice on the floor, don't get upset or angry at them...just clean it up". I ditto that. Love to all of you and thank you for letting me get out what I needed to get out. God, please keep blessing our Roman and ALL kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| March 25, 2008 Hello to our family, friends and new friends! Today, was the day that we have been waiting for!!! Roman FINALLY got all wet in his first real bath in almost 12 months. He knew his routine so daggone well... that when Mike said "it's bath time" Roman went to the kitchen drawer where I keep the plastic baggies etc. and pulled out the press n'seal wrap. Just like he has for the past 11 months. Only this time we said "Roman, your line is gone Buddy, and you don't need to wrap up anymore". He then put it down and headed straight for their bathroom upstairs. He was way too excited:) And, Sheridan was too. It took everything in us to keep her out of the tub for a bit so Roman could enjoy a bath alone. She has been wanting so badly to take a bath with her Buddy. Well, tonight, she finally got to do just that. He smiled, and kept pouring water all over himself with the red and green cups we have for them to play with. He did'nt really want to sit all the way down in the water, he's so used to just squating and not getting wet. He will I'm sure get used to baths again. He did NOT want to get out at all. He was a prunie mess!!! Mike took a pic of his prunie feet. He had a blast and so did Sheridan. Mike and I just loved watching them play together and Sheridan washing his back for him. She's so sweet! Mike and I also LOVED the fact that this bath marked another step to "normalcy" for the Fariello household. Who would of thought that a bath would ever have such an impact on our family life as this one did tonight. And, we are happy to share these wonderful and exciting times with all of you out there. This was a big night for Roman. One that he will always remember because he has many pics and crazy parents who catch everything on video. So, I will end there tonight. God, please keep blessing our Roman as you have and bless all kids fighting for their lives. God, thank you for giving our family the gift of appreciating the little things in life, like baths. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 23, 2008 Hello to our family, friends and new friends! Happy Easter!!! As you can see in the pics, the kids had a GREAT Easter weekend. Friday, Aunt Coleenie and cousin KK (Kathleen) came over to color eggs with us. And, on Saturday, Sheridan and I went to see College Road Trip at the movies with Aunt Coleenie, KK, Aunt Sissy, Uncle Chet, Patrick, Noah, Ciara and their neighbor friend Trey. Then we went out to eat with everyone. And, today for Easter day, Derney and Duppy came over and brought the kids even more goodies and toys. And, Mike and I hid eggs in the house for the kids to hunt too while Derney and Duppy were here. It was a great weekend and fun. Roman is in mid cycle with his oral chemo. Other than being very tired and a bit cranky at times, he is doing fine. And, probably tomorrow night or Tuesday night, Roman will be able to finally take a REAL bath!!! His surgery sight looks real good and is healing just fine. It is reduced to just a tiny hole where the line was. Sheridan is on spring break this week, so we have a week off from school and Mom has a week off from us. A well deserved much needed break from us I might add. Did I ever really tell anyone that I have the BEST mother in law and father in law in the world!!! I truly am blessed by them. As tonight brings a close to Easter 2008, I ask all of you to do me a favor...please just think about how lucky and blessed you are. There are so many families right now who cannot be with there kids, because of cancer. Like going thru treatments, or transplant, or being in isolation like Roman. Or, God forbid, their angels are in heaven and cannot be with them because they are watching them from above. Just be thankful you have your family, your kids, your health, your home, your jobs, and most of all, precious time. Enjoy every minute! That's what I ask from all of you. God, please keep blessing Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 20, 2008 Hello to our family, friends and new friends! Well, today was 1 day, out of more than I can count, that we didn't mind going to the hospital...THE LINE IS OUT...HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Of course, not without making Mike and I a bit upset that Roman had to wait almost 45 minutes to go in for surgery. But, we dealt with it and everything went according to plan. The pics are of Roman a couple nights ago eating tacos and falling asleep at the table. And, the one of him with his line still in was taken this morning before we left for the hospital. The others were as soon as they called us back to recovery to be with him. He was so OUT OF IT and resting peacefully as you can see. All that is on the surgery site is a tiny piece of gauze and a tegaderm to hold it in place. Roman is not allowed to get it wet for 3 days. But, we have never been happier that it is out finally. He did real well with going under as he always does and woke up just fine without any problems. Other than the wait before hand, everything turned out really well. The other pic is when we got him dressed he was still wanting to lay down. So he picked his favorite sleep postion, on his belly, and was eating a graham cracker. He and his sissy are hear and the first thing he did when he walked in our house is lifted up his shirt to show Sissy and Derney that his line was gone and he said "gone". So, we have been truly blessed again by the grace of God that Roman has finally hit a milestone that is huge for him. This line coming out totally changes how he will be treated from here on out. God forbid he ever gets a fever again, there is no automatic visit to the er/hospital. He will not automatically have to go in. Which is HUGE for us. And, just daily day to day living as a 2 year old lives. Playing, jumping, climbing etc. and no line to worry about getting damaged or stuck. And, yes, he can finally take a real bath. It has been 11 months since Roman has had a real bath. A bath that he can play in, and get wet all over! So, we are looking forward to a great Easter weekend. Aunt Coleenie and Kathleen are coming over tomorrow to color eggs with us. And Sunday, Derney and Duppy will be here at our house for a small egg hunt.
Easter brings alot of memories for Mike and I to last year. Easter is the time when Roman's eye was swollen and looked really bad. We had thought it was due to him hitting his eye on a toy. Little did we know that a nasty, evil cancer was wreaking havoc in his tiny body. The toy that Roman fell on was a toy that Derney bought for him from last x-mas. It was a wooden barn that came with animals and a fence. Roman hit his right eye on the corner of the barn. Mom felt real bad at first that she got it for him. Almost kind of guilty feeling. Since then, we have talked at great lengths and we do realize now for sure, that the fall on the barn is what led us to catching the cancer when we did. As I sit here today typing this, I feel that a miracle happened that day. And that God was holding Roman in his hands. God had a plan for the barn being in the right spot to hit the right eye on the brow bone. Remember a while back I reminded everyone that "where you are in life is where you are meant to be", well Roman sure was where he was meant to be on the day he hit the barn. The way the tumor was growing so fast above his eye and almost into his head, if the fall did not happen, and say a month or so went by, I don't even want to think about how much time the cancer had to grow and spread more. So, Derney, I know you will be reading this. Mike and I thank you for buying the barn. It was a "life savor" and caught our attention. We love you always! I will update over the weekend. Until then, God bless all of you and love to all of you! God, thank you for keeping Roman safe during surgery. God, thankyou for telling Derney to buy the barn. God, thank you for keeping Roman in your hands and keeping him safe thruout his cancer journey. God, please keep blessing Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| March 18, 2008 Hello to our family, friends and new friends! Today, Roman went to see Dr. Motley. The eye doctor who ordered Roman's original Cat Scan last April. Roman did very well. Even better than all the previous appointments. I believe due to the fact he is older and talking much more. He was able to pick out 3D pics with special glasses and name the objects as well. And, was able to view and say what the objects were on a tv with each time getting smaller and smaller to see. Dr. Motley was pleased with how well Roman's eye looked. And, he took another pic of Roman to share with the board of opthomologists that he sits on. Roman was a learning tool for a group of docs, including Dr. Motley. Some of these docs are at UC too. So, all of these docs will be pleased to see Roman's before and after pics with his eye. Dr. Motley wants to follow up with us again in 3 months, in June sometime. And, I asked him if he could give Sheridan an eye exam for kindergarten. He told me that would be no problem and he would see them both in June at the same appointment. So, good news today with Roman's eyes:) He's doing just fine.
And, to point out that we are on the countdown here for the central line. The rest of today and tomorrow, then it is the day we have been praying and hoping for...Thursday...Central Line Celebration Day!!! It is coming out. I know everyone really don't grasp what we've had to deal with by having that line in. I cannot even name ALL of the negatives. But believe me, we are so ever ready and excited that it is finally leaving his body! We have to be in surgery pre-op by 11:30 and surgery is scheduled for 1:00. So, that is all I have for now. Tomorrow will be a good day here because we know what the next day after that brings for Roman and our family:) FREEDOM!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! God, please keep blessing our Roman and all kids fighting for their lives. God bless all of you and love to you! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| March 17, 2008 Hello to our family, friends and new friends! We had a great weekend here at the Fariello household. On Saturday, early afternoon, Mike dropped off Roman and Sheridan at Derney and Duppy's house to spend the night...and Mike and I had dinner plans with the Powells, the Re's and the Halloran's. It was so nice to have an evening without the kids. We love you Sheridan and Roman, but Mommy and Daddy needed a break:) They have never spent the night, together, anywhere. Sheridan has spent the night before with Derney and Duppy and of course, Roman has only slept here at home and at the hospital. So, that being said, Roman did not sleep too well at Derney and Duppy's house, but, in time, he will be just like Sheridan. Derney and Duppy loved having the kids, but, as anyone with kids knows, they are exhausting. Mike and I enjoyed our much needed night out with the other couples. It felt good to laugh, and laugh some more with them. Thank you guys for making it a fun night for the Fariellos:)
Tomorrow at 9:15am, Roman has an eye appt. with Dr. Motley at Crestview. I do think this will be his final appt. with Dr. Motley. Roman's eye looks great and his vision is awesome. So, I will let all of you know what happens. I am also going to ask Dr. Motley if he can give Sheridan an eye exam for kindergarten. She needs an exam as part of the enrollment process. Derney will be going with us too.
Also, as all of you know, this is around the time last year that Roman hit his eye on a toy here at home. This is the time that his eye started to get real swollen and change daily. This is the time that I will start reflecting on our past year as we near Roman's 1 year anniversary on April 25th. This is the time when Mike and I and our families will have to relive that horrific day and time. This is the time that we have so much to be thankful for and so many prayers that have been answered. So, I am going to let all of you know ahead of time...I am already very emotional about everything and anything. So, as in future updates, I may do a little reflecting or alot. It just depends on how I am doing. So, please, bear with me. All of you have so far. And, on a lighter note, everyone knows that this Thursday is going to be a VERY emotional day for us with Roman's central line coming out finally. It will be a day of many many tears, mostly of JOY!!!! I want to personally thank all of you for going along this long road with us. We feel blessed knowing you are there for Roman and our family, and have been all along. God bless all of you! And God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| March 13, 2008 Hello to our family, friends and new friends! Boy oh boy...have we got the BEST NEWS EVER!!! Roman is scheduled for surgery next Thursday the 20th, at 1:00pm to have his CENRTAL LINE TAKEN OUT...HOORAY!!!!!!!!!!!!!!!! Mike and I could not be happier. And, to top it all off, Corey Nickell had his central line taken out today. I just talked to Debra Nickell and told her the news about Roman and found out that Corey is doing just fine from his surgery today. Both boys have just been thru so much. And both have endured so much pain. This is, in a way, a very emotional time for us parents because it is one more step closer to "normalcy" and one more chapter of this nightmare coming to an end. Roman's central line has been in since last April 27th. Corey's has been in since last Feb. 2nd. So, as you can tell, both families are just elated to have these out. No more taking care of the lines on a daily basis, no more flushing lines, no more dressing changes, no more cap changes, no more worrying about holes in the lines, no more risk of infection in the lines etc. This also means that Roman can actually be submersed in water for a bath. He can play in the sink with his Sissy, and we can actually wash all that new hair that is on that adorable little head:) I am just so excited right now I cannot even stand it. To have a date for this to come out is just a blessing and a relief all in one. Roman's counts have never been better either. His white was 4.7, his hemoglobin was 11.3, his platelets were 279 and his ANC was 2070. We have not seen numbers like this literally in months. And, the best of all...Roman's triglyceride level went down from 251 to 181. A HUGE improvement. Dr. Wagner was pleased with Roman and does not want to see us for another 4 weeks. So, we will begin the oral chemo again this Sunday for cycle 2 of this part of the protocol. We will be putting it in icing on a spoon just like last time twice a day for 14 days. So, rest assured, next week for his surgery, I will be a video crazy Mommy and will not miss any part of this special day for the Fariello family. I already told my friend Anne that I cried horribly the day it went in his tiny chest, and I will cry just as hard with it coming out. For it is a "battle scar" if you will, for Roman and our family. Roman will be hindered no longer and will be FREE to really be a normal little 2 year old boy. That's all I have for now. God bless all of you for going along with us on this up and down rollercoaster ride of cancer life. God, keep blessing our Roman and all kids fighting for their lives. Oh, and by the way...Thank you God for answering a mother's prayers... of course, that mother is me:) Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 11, 2008 Hello to our family, friends and new friends! Well, I have wonderful news to report about Roman's evaluation from today. The lady came to our house by 3:30. She has 17+ years experience working with kids and evaluating them. She also has speech therapy experience and experience just being a mom...and I think the mom experience is first and by far the most important. Just my opinion:) She tested him on all levels... physical, fine motor skills,color and shape and animal recognition, speech etc. And, as if we did NOT know this already, Roman, in her own words was "age appropriate and beyond". THAT made me sigh peacefully and gave me a huge smile:) She said Roman was saying words that even some 4 or 5 year olds would have trouble saying. And, the fact that he can say and point to most if not all of his colors, shapes, letters etc. made her very pleased with her assessment. If he was not already "in" First Steps because of his hearing issue, she said she would have to turn us down because Roman did so very well. And, speaking of the hearing issue, from her standpoint, she thought Roman did not have a speech/hearing issue. She is however, going to send a speech therapist to us so Roman can be assessed by her as well. From that, the speech therapist may conclude Roman needs nothing, except to be monitored every 2 months or so. So, I will keep all of you informed when the speech therapist contacts us to set up an assessment on his speech. I am also very glad we did not rush out to buy a $4000.00 pair of hearing aids that he may not even need. We will do a hearing exam on Roman when he is closer to the age of 3 in Ocotober. I feel confident that hearing aids right now, are just really not warranted. That is with Roman's doc's opinion, our opinion and now a person who has 17+ years opinion is. We will monitor Roman like we always do and keep an eye on the hearing situation. If in fact he does have a small hearing issue, it is obviously not enough to hurt or impair his speech and hearing and learning capabilities. He is just like a normal 2 year old and even better. And, with news like that, Mike and I could not be happier:) So, nothing is going on for tomorrow. Thursday Roman has a clinic appt. at 10:30 with Doc Wagner. Everyone knows we want that central line out and I will not leave that day without a possible surgery date to have it REMOVED!!!! Possible because it banks on his counts and lab results. And, Lauren's (our angel) Mom, Janine, came by today and made Roman a SpongeBob Prayer Blanket and got Sheridan some SpongeBob Shoe strings and stickers. It was great seeing you Janine and we love you and thank you for always thinking of Roman and our family. You are such a sweet lady and we are happy you are part of the Fariello family forever. That's all for now. God, please keep blessing our Roman as you have. You have POURED such greatness into our lives since April 25th, 2007. I ask God to keep Roman safe all the time. And, so far he has answered my prayer requests and all of yours. We thank all of you for your prayers and support always. Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 10, 2008 Hello to our family, friends and new friends! Let me start out by telling all of you that tomorrow, an evaluation will be done on Roman here at home starting at 3:30. This is part of the First Steps program, to see if and what type of therapy Roman needs. Speech is the one that is in question because of his hearing. From a Mom's view, I really don't think Roman has a speech problem. I think that whoever is going to evaluate him, is going to have a hard time trying to find out if it's hearing related or is it just his age and learning how to talk. I will let all of you know how it goes tomorrow. And, today, Sheridan had her visit with the allergist. He took alot of history from us. And, with our family history of allergies, Roman's peanut allergy, and her eczema, he wanted to test her. So, if anyone has ever been tested at an allergist before, you will know what I am about to tell you what happened. They put 20 tiny needle like things all over her back. Each one being a different allergy/group. And, then they rub it back and forth over her back a couple times, digging it into the skin. For an adult, I am sure it does not feel too great. For a 4 year old, it hurt her and stung and itched alot. I felt bad for her. She did not cry in front of them, she waited until they left the room. I held her and told her it would be ok. It broke my heart to see her cry real tears. But, we had to find out some things. The test took 15 minutes to get results. Sher's allergic to any and all things outdoors like trees, grass, pollens, etc. She is also allergic to cats, NOT dogs. We thought she was allergic to both animals. Also to dust mites. And, she tested positive to legumes like peas, beans and soybeans. However, this does not mean she has to cut these out of her diet. The doc said she tolerates them or we would see an outward reaction like to a peanut, like Roman had with hives all over. She also tested negative for peanuts, cow's milk and chocolat. That being said, there is something going on with her tummy still. Like cramping from time to time and upset tummy. The doc wants her to be on Allegra everyday for a about 4 weeks. He wants to see if the Allegra will help with her tummy. When we go back in a month, he will decide if Sheridan needs a stomach biopsy. Yep, you guessed it, at Cincy Childrens, with the GI docs. The reason for this would be to test her for a lactose intolerance, a gluten intolerance and one other intolerance I forgot. So, knowing how proactive Mike and I are with Roman, we will NOT let Sheridan be treated any other way and in any discomfort. So, at our request, she will probably have the biopsy done to rule out any suspected food and give Mike and I peace of mind to know what we are dealing with. Unfortunately, there is no accurate skin allergy test for lactose, gluten and the other thing. So, the ONLY way to find out for sure is a tummy biopsy. So, I will keep all of you informed just like I do with Roman. My best friend Anne, who handles all of the Roman benefits, has a gluten intolerance...so Mike and I are not blind to that intolerance. Thanks to Anne, we love you Anne! And, the lactose thing is a family inherited thing that kids can get from parents and anyone in the family. Mike's Dad and his brother Steve all have lactose issues. So, the odds are against her. We will handle this just as we have everything else...one day at a time. Something is bothering Sheridan's tummy with foods, and we are determined to find out what it is. So, until April 7th, she will take Allegra and eat what she has been eating all along. OK...that is all I have for today. God, please keep Sheridan safe from tummy episodes and feeling bla. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 9, 2008 Hello to our family, friends and new friends! Well, we hope everyone has enjoyed the huge snowfall this weekend. Today, we went out and played in the snow. We had a great time. Both kids loved it. Roman was not too sure of the snow at first. But, as we were out there more, he fussed and did not want to come in at all when it was time to. It felt good to see them both doing a "normal" thing like playing in the snow together. In case you are wondering...the little pig that is with Sheridan, is a school project. His name is Owen. And we have to treat him like one of the family until he goes back to school on Tuesday. He spends every weekend at a different family's house and we have to write about his stay in Owen's Adventures book. It is way too cute. On Saturday, Sheridan was not feeling to great..so we just hung out. I am leaning towards her having some sort of food allergy. She has not been right since last Sunday night. Milk, dairy, whatever seems to aggrevate her. So, I have made an appt. with an allergist on Monday morning to determine what's going on with her. I will let you know when we get home tomorrow. Friday was Mike's 35th birthday. Happy Birthday Honey! We love you! And, since the weather was real bad on Friday, Mike's company let them leave at noon. So, he was here at home with us for most of his birthday. Last week, I forgot to tell all of you...we had a representative from First Steps come and get Roman's history. She will then refer us to an evaluation person to see if and what Roman needs as far as speech therapy. So, I will let you know more when I know more. Roman is doing just fine. He has a clinic appt. this coming Thursday at 10:30. They will draw labs, and do another urinalysis. We will be looking very closely at his triglyceride levels. He was 251 the last time. So, hopefully, they will not be that high this time around. Also from this visit, we will get to know if Roman's central line gets to come out the following week. As long as his counts are good, the doc said it could come out. So, please, PLEASE pray his counts are fine with no problems. I also wanted to ask all of you to pray for the Thornton Family who I follow daily on the internet. They just lost their daughter last night, Harley, to neuroblastoma. She was 2, just like Roman. Her wings into Heaven came very fast. We do not know them personally, but feel as if we do because of her horrible diagnosis. And, just so many other families that I follow on the internet, that are suffering with childhood cancer. Please pray for them, I cannot even list them all. But, I know they would appreciate any and all prayers coming towards them. You know, reading their horrible stories, just like ours, makes today seem that much more important to Mike and I. Watching Sheridan and Roman, playing in the snow, being brother and sister, spending precious time together... That's what life is all about. Don't miss a beat of it. And, if you have not done so today, get dressed, go out with your kids and have a blast. Make it fun for them. House cleaning, bills etc, can wait...your kids can't. More tomorrow. Love to all of you and bundle up!!! God, please keep Sheridan safe from being sick and let us find out what she's allergic to. God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| March 4, 2008 Hello to our family, friends and new friends! Today's update has a mixture of news, so please bear with me. The pic I sent to all of you is of Roman's home nurse, Pat. I wanted to get a pic of her with the kids so all of you could see who's been coming to our house all these months taking care of our Roman. Pat has been so good to Roman, Sheridan and to us. Pat knows that there's a good possibility that the week of the 17th, Roman's central line could come out...and that means we won't be needing her any longer. She of course, will come and say goodbye, but she knows she is always welcome to stop by and see us anytime. We love you and thank you Pat for EVERYTHING...from taking great care of Roman and for getting both kids gifts all the time and for making Sheridan feel special and involved in Roman's care. Your the best! Today, we did indeed get great news about Roman's urine...NO trace of blood was found in his urine. His urine came back with everything fine and Dr. Wagner was pleased with the results. So, we are good to go until March 13th for his clinic appt and lab draw.
I have a few prayer requests today...I heard from another Mom who was on the transplant floor with us. She informed me that Baby Girl Angelina, earned her wings into heaven on 3-2-08. Just 2 days ago. Angelina had lukemia, JMML. She was diagnosed in the same month as Roman, April'07. Her family is from Hamilton Ohio. I have met them, seen Angelina, and talked to her Mommy numerous occassions while on the transplant floor. It hurts me to tell all of you the bad news about the sick kids on that floor. But, that is reality. Nothing is more painful than to meet these families, get close to them, and feel their loss. And, believe me, we do:( Please keep their family in your thoughts and prayers. Angelina was a beautiful little girl who was 2 just like Roman. Also, please say a prayer for Corey Nickell's cousin Christian...he is battling Evans Syndrome. He and Corey are the same age (3). His Mommy works at Childrens, so you can imagine how difficult this is for them, on top of dealing with Corey's neuroblastoma like Roman. Same family, 2 cousins battling 2 different diseases, same age. What are the horrific odds of that...just please keep the Nickell family and extended family in your prayers as well. And, finally, God, thank you for keeping Roman safe from blood in his urine and TMA away. Our journey is a day to day journey. And we live life everyday as if tomorrow would be gone. Angelina's death proves to all of us that we must embrace life, our kids, family, friends and most of all, time. It is precious, please don't waste a single minute of it. God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| March 2, 2008 Hello to our family, friends and new friends! Today, was such a great day outside, we just had to let the kids go out for a bit and play together. They did mini cornhole, and blew bubbles, and drew with chalk on the ground, and played with moonsand, and bat and ball. They had a blast and it was good for them to get out and enjoy! Friday, Mom came over to sit with the kids for a couple of hours so Mike and I could go to Sheridan's parent/teacher conference with Miss Terri and then we went to lunch together. The conference went exceptionally well. We are very happy, honored and proud to report...that our Sheridan is ready to move on to kindergarten in the fall. HOORAY!!!!! Miss Terri had nothing but great things to say about Sheridan. And, the best compliment was that this class is so very close with one another, so loving and so caring, Miss Terri said that our Sheridan had a BIG part in making that happen. Talk about feeling PROUD as her parents!!! She is doing a great job with everything and Miss Terri said she won't have any trouble with the screening they give to enter into kindergarten. Then, Mike and I went to Red Lobster and had a great lunch. Then, Saturday was the last day for Roman's accutane. HOORAY!!! He made it thru the first cycle. We also noticed that he was experiencing headaches. So, Tylenol helped him with those. A look to tomorrow, Roman's home nurse, Pat, will come out to change his caps and his dressing and drop off some urinalysis cups for his urine test on Tuesday. I will update with results of that as soon as I get them back. Please pray for no blood in his urine this time. Also, prayers still needed for Chet with his knee recovery and for my mother in law who is still not feeling all that great yet. Enjoy the kids pics and God bless all of you! God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 28, 2008 Hello to our family, friends and new friends!
Yesterday, Sheridan had a Tea Party at preschool. The kids got real dressed up, parents brought goodies and the kids actually ate and drank off of real china!!! And, with no breaking casualties to report. They all looked so cute and Sheridan enjoyed sitting with her little girlfriends having a real tea party. I wanted to share those pics with all of you.
Roman is doing pretty good. His rash around his mouth and face have gone away for the most part of just one night of putting Vitamin E on his face. The doc wrote us a script for it. It has helped with the redness and dryness. So, at least we know with the next cycle of accutane, we can head off any dry, red skin for him. Also, on Tuesday of next week, Roman will be having another urinalysis done. Dr. Wagner knew, of course, that I was worried since the trace of blood and mucous was found in his last one. Dr. Wagner is doing this for my bennefit, to ease my mind so to speak. Fine with me, I will do whatever it takes until we draw labs on March 13th. We have to drop off Roman's urine at the Crestview Childrens location early in the morning so we can get the results back that day. I will let you know then what his results will be. Roman is just doing remarkably well. We also got a call from the speech therapist at Childrens who worked with Roman during transplant. She has got the ball rolling for us with the program called First Steps. She said someone should be contacting us soon to set up an assesment day for Roman. And, the great thing is, we won't have to take him out anywhere for this. The therapist will come here to our house to do the assesment and all the treatments that will follow until the age of 3 if need be. So, more on that when I get more info.
We also have heard from Lauren "our angel" the past 2 days. The kids got to see her on the webcam the other night. And, she and I chatted online for a bit yesterday. Thank you God for technology. Lauren is settling in pretty well. She said she had about a week of sleep adjustments, due to the fact that over there they are ahead of us 14 hours. She said she misses her hair products from here. I tell her all the time that she would be gorgeous any way, shape or form, and even make a brown bag look awesome! We love you Lauren and are so happy you are happy and doing well settling in. We will soon send her and Joey a carepackage from us and the kids. And of course, send some AirHeads over there too! So, that was just an update to fill all of you in on the past couple of days. Roman stops the oral chemo Saturday night. Enjoy the pics of Sheridan. We love you Sheridan and you are growing up so very fast before all of our eyes. God, please keep blessing our Roman and keep TMA far away from him. And, the CANCER even farther away from him. God bless all of you for following us thru this long journey. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| February 26, 2008 Hello to our family, friends and new friends! Let me start out by telling you about my day yesterday. I had a doc appt. for myself yesterday morning. It was a visit to the female doc we all love to see on an annual basis. Her name is Dr. Peggy Heis. It has been a year since I saw her last Feb. And, of course, she had no idea what was going on with Roman. So, I had to tell her the whole story from the beginning and showing her pics of Roman with his eye tumor, during transplant and now with how far he has come. She sat right down in the chair and proceeded to give me all of her time and attention. At least for an hour. Not including my actual visit. That came after our talk. Let's just say that I did not start her Monday out good at all. She could feel all of my fears and pain. I want to thank Dr. Heis for giving me herself and her time. It meant all the world to me. She took things rather hard because she did indeed bring Sheridan and Roman both into this world. Dr. Heis will follow Roman's progress from now on thru his website. Dr. Heis, you are the very best there is. Thank you so much for putting me "above" all of your other patients yesterday. When I left, I could see a room full of people waiting and that did not stop her from giving me her most precious time. Dr. Heis, you are the best and there needs to be more docs like you in this world.
Now, onto Roman's visit at the clinic today. We finally got to see Dr. Wagner...HOORAY!!!!!!! Not that the BMT docs were bad or anything, we are just happy to be back with Roman's "Quarterback". He was impressed with Roman and how he looked. His previous labs looked real good, so, all he wanted to do today was a urinalysis. And, I already had that in a cup for him. We talked alot about the oral chemo drug and side effects. Roman's red dry skin around his mouth, is classic of accutane. So, he wrote a script for vitamin E capsules for us to put on Roman's lips and around his mouth to help. And, Roman's blood pressure was 90/57, perfect for him, and his weight was 13.8. So, he was thrilled with how Roman is doing. I also asked the very big question that Mike and I wanted an answer to...YES, the central line can come out the week of March 17th. Dr. Wagner wants Roman to get thru this first cycle of accutane and draw labs on March 13th before he starts his 2nd cycle of accutane on the 16th. From those results, we will determine the line coming out. Also, we did get back Roman's urinalysis today. He did have a trace amount of blood in his urine and some mucous. Of course, immediately, I went into panic mode because blood in the urine is a sign of TMA possibly coming back again. So, our coordinator called me this afternoon and said that Dr. Wagner was not too terribly concerned as of right now, because everything else came back good with his urinalysis. The main thing we also look at is protein. Roman had no protein in his urine. So, we are going to do another urinalysis next Tuesday just to see how he's doing a week from today. Dr. Wagner knows that we are worried about the TMA coming back because accutane causes TMA in some kids. And, of course, Roman already having TMA, just scares us that much more. However, Mike and I have EVERY confidence that Dr. Wagner will be watching Roman extremely closely because of the previous TMA condition. Again, my brain knows to calm down with this urine result, but my heart is very scared and worried. And, unfortunately, I will probably worry for the rest of my life and Roman's. So, Roman has to take this drug until Saturday night. That will be his last dose for 2 weeks until the 16th. I will probably not update as much since there really isn't much going on. I will update with cute pics or whatever and of course with the urinalysis results next Tuesday. Until then, prayers, prayers and more prayers for Roman that this is not an early sign of TMA coming back. Prayers that he can continue this drug to be the final knock out punch for this nasty cancer. God, please PLEASE keep Roman safe from TMA and keep blessing our Roman as you have. We love all of you and thank you for your continued support and prayers always. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| February 24, 2008 Hello to our family, friends and new friends! Well, as you can see the kids have been playing dress-ups again!!! What Sheridan does to her poor baby brother...black mail pics for when he starts dating:) Yes, I have the faith in me that he will make it to his dating years and far beyond:) Also, the kids with their Derney and Duppy (grandma and grandpa). As you can see maybe from the pics that Roman's mouth is a bit dried out. Could be weather related, or medicine related. That drug has a side effect of dry skin. Anyway, just to let all of you know that's maybe why his face red. We have a clinic appt. Tuesday at 10:00am and that is on my list of questions and concerns for Dr. Wagner. We had a good weekend. Last night's show of Larry the Cable Guy was an absolute blast. He is truly very funny. We laughed real hard the whole time. And Andy and Jenn took us to Rock Bottom Brewery before the show. I enjoyed my food. I have never been there before. I would go there again:) And, since my birthday was Friday, Mike bought me my favorite...a pint of Greaters Black Rasberry Chip ice cream. Yummy! And, after the show last night, we stopped at guess...Greaters for dessert on the square. This time I got my second favorite, choc ice cream with marshmallow on top. Yummy again! Anyone who knows me well knows I LOVE Greaters ice cream. So, a big thank you to Aunt Jenn and Uncle Andy for getting us tickets to the show and taking us out for a fun night. Today, I went shopping at Walmart and then to the grocery store...yippee! So, not much going on here except for "normal" things that families do, outside of this drug we give him twice a day. Today marks the one week mark for Roman starting his "icing" on a spoon for us. He has another week to go then a break for 2 weeks. As all of you know, the very first question I have for Dr. Wagner on Tuesday is...when can that central line come out of his chest??? I hope to get a direct answer that day. As for now, enjoy the pics and please continue to pray for Chet, Coleen, Mom (still feeling bla) and of course Roman. God, please keep blessing our Roman and all kids fighting for their lives. God bless all of you Roman supporters. We cherish you in our hearts always. Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 22, 2008 Hello to our family, friends and new friends! Well...today was my 38th birthday...Happy Birthday to me...it was a good day. Mike's company called off for today so he got to spend the day at home with me and the kids. We did absolutely nothing all day. The kids aggravated Mike and I all day long. I cannot wait til we can get out of this house like a normal family and do stuff together. Besides it being winter time, we all feel like caged animals in here because of Roman's isolation status. Anyway, back to my birthday...I want to thank my family and friends who sent me birthday emails and beautiful cards. Most, if not all of my birthday cards were of inspiration and hope for a great year of health and happiness, not just for me, but for all of my family. I am sure that I don't have to tell you what my birthday wish is...yes, you guessed it, that Roman's cancer NEVER rears it's ugly head ever again. That he always remains NED. If only there were guarantees on birthday wishes huh! I also wanted to thank Stephanie, Macy's mommy for taking Sheridan to school and picking her up yesterday for me. And, letting Sheridan play at your house with Macy after school. She had a blast. Also, Stephanie, thank you for the Wiggle movies for Roman. He LOVES them! Prayers are still needed for my brother in law Chet with his knee recovery. He is in alot of pain this time around. And, for my mother in law...she is not feeling too good the past couple of days. And for my sister Coleen...who is grieving the loss of her beloved boss of 18 years. Let's see, what else...on a lighter note, Mike and I are going to go see Larry the Cable Guy tomorrow night at the Taft Theater. My sister in law Jenn got us tickets for x-mas. Aunt Jenn knows we are always in need of laughter and what better way to get it than from Larry the Cable Guy. We are also going to dinner too. It will be fun for us to have a night out like that. Mom, Dad and maybe uncle Steve will be here with the kids. So, I will end again by telling everyone thank you for my birthday wishes and all of the calls of beautiful singing to me!!! My Mom always made birthdays a huge deal for us growing up and even into adulthood. And, she always called us and sang to us on the phone. My sisters and I carry on that tradition with alot of our family members and friends as well. I cherish every moment like that always. I love all of you! God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 20, 2008 Hello to our family, friends and new friends! Well, today Sheridan had no school due to the weather this morning. So, it was kinda nice to not have to go anywhere today. And, my mother in law got a free day from coming over to sit with Roman. Roman is still doing ok with his medicine in the icing. However, the past couple of days, he's been a bit on edge, short fused, and very moody. All of which could be medicine and/or terrible two's! Either way, I played referee between Sheridan and Roman all day long. He seems to be having mood swings, that can be caused by this medicine. If that's the only horrible side effect that we have to deal with while taking this drug, then we will deal:) Anyway, I hope you enjoy the pics of the kids and Derney (grandma for those of you who don't know who Derney is). Marsha, a mom friend in our neighborhood, brought us dinner tonight just because she wanted to. We would like to tell her THANK YOU so much for thinking about us always and for filling our bellies. It was way too good. Mike wants the recipe!!! God bless you Marsha! I also have a couple of prayer requests...All of you have done wonders with Roman prayers, maybe you can do wonders with these prayer requests... that my brother in law Chet recovers from his knee surgery without complications. For my sister Coleen, her boss passed away last night in his sleep. She has worked for him longer than I can remember. Please pray for his family at this most difficult time. And to you my sister Coleen, we love you, and we know how much he meant to you, even way more than just a boss. We are always here for you, always:) And, Corey Nickell has his MIBG scan tomorrow...please pray for NED (no evidence of disease). Also, Jessica Rose has scans coming up soon, please pray that the disease has not progressed anymore. And, finally God, I know there are alot of prayers needed tonight, but as always, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 19, 2008 Hello to our family, friends and new friends! Roman has taken his medicine hidden inside butter cream icing, just fine without any problems. I think he actually looks forward to licking the spoon clean! He really is doing a great job. I just pray that he does not get any horrible side effects with this medicine. So far, so good for Roman. Everything will be status quo until we go to the clinic to see Roman's oncologist, Dr. Wagner, next Tuesday. They will do labs and a urinalysis to see where things are with Roman. I also talked to one of the other Mom's at Sheridan's school who is a speech therapist. Thank you Tracy! I told her we are in search of one. She said she will come by and assess Roman soon and give Mike and I some info that we could use to help Roman along. She also is getting us in touch with a program called First Steps for us. She knows a therapist there. A speech therapist will be assigned to Roman. She will come to the house for an hour a week and work with him. The good thing about this program is that we don't have to leave the house for it because Roman falls within the age limits (1to3). And, they will work with Roman until he goes to preschool and so on if needed. I am looking foward to getting things started with speech for Roman so we can get his hearing aids. Speech therapy is needed now because we need to find out if Roman is just doing what he is suppose to be doing at this age or is he doing things that are due to his hearing loss with his speech. That is what we need to find out. That's what a speech therapist will be able to decide. And, Sheridan had school today. Derney (grandma) came to stay with Roman so I could take Sheridan to and from school. Friday, Mike and I have parent/teacher conferences for Sheridan at preschool in the afternoon. Also today, we got an email from Lauren. She's getting settled in her new home with her husband overseas. We cannot wait to get to see her on the webcam. The kids will love seeing Lauren, they love her alot:) We love you Lauren:) I will end with...God, please keep Lauren and Joey safe. God, please keep blessing our Roman and all kids fighting for their lives. God, please keep this evil cancer far away from Roman. God bless all of you and be careful in the morning with your commute. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 18, 2008 Hello to our family, friends and new friends! We hope everyone had a good weekend. Well, we wanted to let all of you know that we FINALLY got Roman's medicine in him tonight...he was suppose to start it yesterday morning, and that was not for lack of trying by Mike and I. I tried and it did not go over real well mixed in choc milk. Mike tried in cottage cheese and that did not go over well. It's way too difficult to explain but we think we have a good plan in place from here on out. We did alot of brain storming to see what kind of fatty food with substance and thickness that would work out best to mix in Roman's drug. I thought of icing/frosting. We had some butter cream icing and Mike tried that tonight on a spoon and it worked out really well. Roman said "yummy" and of course he did not know we hid his Amnesteem in there. So, it's official, Roman started his oral maintenance cycle of this protocol tonight. Hooray! I just hope that when they call and see how we did this weekend giving it to him, that they are ok with the icing! Anyway, I wanted to let you know that Lauren landed safely in Korea and is now with her husband Joey. Lauren's Mom Janine called us and told us she made it ok and that she of course was exhausted. But, I know that Lauren is very happy to be with her husband Joey. We love you Lauren and best of luck as you start your married life together over seas. We can't wait to see you on the webcams! And, my brother in law Chet will be coming home tomorrow from knee surgery in Cleveland. He will be on introvenous antibiotics for 8 weeks then he will have a doc follow up visit and will decide what to do from there. So, please pray that he has a safe trip back home. That's all I have for now. God, please keep Lauren and Joey safe over seas. God, please get Chet back home safely. And, finally God, please keep blessing our Roman. Make sure his triglycerides can handle this drug even though they are already high and his liver enzyems too. This is medication that is suppose to help knock out any remaining cancer cells...please God let there be no more cancer cells in his body...EVER. Thanks to all of you for your love and support thru out this long journey with us. We still have a long way to go. God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 15, 2008 Hello to our family, friends and new friends! OK, today, I spoke with the drug manufacturer, Mylan, about Roman's peanut allergy. The drug in question is called Amnesteem. The man ASSURED me that they did not use any peanut product and or peanut oil in their drug. They use vegetable oil and sunflower oil. I did indeed ask for documentation on any child/teen/adult that had a known peanut allergy that took their drug without any issues...the man could not produce any documentation for my request. So, with the manufacturer, the docs, and the Children's Pharmacist approving this drug for Roman, he will start taking this tomorrow morning. And another dose tomorrow evening. He will do that for 2 weeks straight. Then, have a 2 week rest period before starting cycle 2. However...I did get Roman's exact triglyceride numbers today, keeping in mind that his normal range is suppose to be around 129, Roman's level was a huge 251. That being said, the cut off or danger level while taking this drug for Roman is at 300. So, all of you can see he does not have much wiggle room with those numbers. This drug does make your triglyceride and liver enzyems run high. With Roman's already being hig while not even taking this drug yet, it will be very interesting what happens from here on out. He will have a clinic visit and labs done on Feb. 26th. From that result, we will see where his levels are and where we stand. That day, we will be seeing Doc Wagner, so I can ask him about the central line coming out of Roman's chest. So, I will update soon again and let all of you know how Roman took his first couple doses starting tomorrow morning. Please continue to pray for Chet, he suppose to be coming home maybe on Monday sometime from Cleveland. And, good news with Corey Nickell's bone and cat scan today, they were negative, nothing found. Thank you God! And, God, please keep Lauren in your prayers for she should be arriving in Korea sometime late tonight. Joey will be meeting her. She will be so happy to see him and be with her husband:) And, God, please keep blessing our Roman. Please keep all horrible and rare side effects far away from us with the start of this new drug. Thanks and God bless all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 14, 2008 Hello to our family, friends and new friends! Well, today started out just fine. Happy Valentines Day everyone. Sheridan had her party at school. I got to be there and help out the other Moms. All the kids loved their goody bags and all kinds of stuff in them from all the other kids and Moms. We gave Fun Dip to all of Sher's classmates. Messy, but kids love'em. And, Mom stayed here of course with Roman so I could go. I even got to eat lunch with one of the other Moms...thanks so much for lunch Stephanie, it was great to finally get a chance to sit and talk to you. Stephanie is Macy's Mom...Macy is like the coolest friend ever in Sheridan's eyes, they just love each other and hug and kiss everytime they see each other and hold hands at school. It is real cute to see Sheridan having so much fun at school with her friends. She needs that so much. Now onto Roman...we did get his urinalysis results back today...NO blood was found in his urine and NO sugar was found in his urine. HOORAY!!! Now, you would think that we could just start the oral chemo tomorrow right????Well, no, not exactly. Last night while reading some the insert info that came with the drug, I did notice it said "if you have any food allergies, let your doctor know"...well of course, all of you know that Roman has a PEANUT allergy. So, that did not sit well with me. So, I then began to read on further about this drug. And all of its horrible side effects. That of course, did not sit well with me either. On the info we got from Biggs, on the precautions section, it stated something like, let your doc know if you are allergic to soy, PEANUTS, soy leictin, and parabens etc". So I immediately went into panic mode. Aside from that, my sister Coleenie and my mother in law also did some research and found out the same thing. When our coordinator called with Roman's urinalysis results, I told her my concerns. So, I am expecting to find out something tomorrow about what to do. Should Roman start this drug or not tomorrow? I am scared to death now that there may be some form, any form, of peanut ANYTHING in this drug that is supposed to help kill off any remaining cancer cells. Aside from his previous TMA condition, his high triglycerides, and elevated liver enzymes, and the peanut thing, I am just a nervous wreck with him taking this drug. I do feel like I am tossing him to the wolves all over again. So, as of right now, Roman will NOT start this drug tomorrow as planned. Not until I get more info from the manufacturer and the docs. I did have a bit of a breakdown tonight when my best friend Anne called me. I cannot hide anything from her, she knows me too well. She could hear it in my voice that I was upset. I went into the laundry room and closed the door (so the kids would not see me) and I just had to cry and let it out. Thank you Anne for calling...you seem to ALWAYS know when I need you the most. I told her nothing about this whole journey has been easy, with easy decisions. It all just really SUCKS. I told her I wanted to buy a t-shirt that says CANCER SUCKS! (They do sell them by the way). I also wanted to ask for some prayers tonight...please keep my brother in law Chet in your prayers. Please keep "Our Angel" Lauren in your prayers, she leaves this morning at 3:30 am for Korea. We love you Lauren and will miss you terribly. Please have a safe trip. And, please keep Corey Nickell in your prayers, he is having all of his tests and scans done this week and next. And, finally, please pray for Roman. If he was meant to have this drug, then it will be. If not, please God, keep the cancer far away from Roman as possible. Please give me the strength to accept the things I cannot change and the strength to keep on going...for I am getting very tired now and very emotionally drained and exhausted. I just want this to all be over with. I want Roman to be left ALONE. He has been thru so much, and yet I look at him and he appears as if NOTHING has happened to him, like he does not have cancer. I so admire his strength and endurance. I wish for this part of our lives to be over with. I want Roman to be a "normal" little boy. I long for that so badly. God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 12, 2008 Hello to our family, friends and new friends! Today, we got Roman's lab results from yesterday...they are so much better than before. Mike and I were thinking they were low from radiation with the last lab results we got. Roman's white blood count is now 3.9. His hemoglobin is holding steady at 10.2. His platelets are now at 303. His ANC is now at 2300. Much much better than previously. He did have a couple of higher than normal liver enzymes which they will keep an eye on. Other than that, Roman is looking and doing great. Our home nurse Pat will come tomorrow to pick up Roman's urine sample and take it to the hospital. We will not get the results from that until Thursday sometime. So, more than likely, Roman will start the oral chemo on Friday. I will let you know when exactly that happens. Sheridan of course did not have school today. Sher and Roman both are playing and enjoying being brother and sister here at home. And, my mother in law... I am sure she is enjoying her off time from us since she is here just about everyday for us. We love you Derney! My brother in law Chet had his surgery this morning and all went accordingly. The doc just took out Chet's knee and put a spacer in it's place. I think it will be like that until 6 months from now and then they will decide what to do next. They also took cultures from Chet's knee since he has some sort of infection it. So, please keep the prayers coming for him and my sister's family. Also, continue to pray for Corey Nickell's testing and scan week. I will update when we get Roman's urinalysis back on Thursday. God, please keep blessing our Roman and all kids fighting for their lives. Please be carfeul out there all of you Roman supporters! Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 11, 2008 Hello to our family, friends and new friends! Today, Roman had a scheduled clinic visit at 1:30. We, of course, were there half the afternoon for labs. They wanted labs to make sure Roman's counts were good to start the oral chemo at home. We got the script for the oral chemo today. It is accutane aka retinoic acid, for severe acne. Obviously, we are using it for it's "other uses". Taken for 6 months, 2 weeks on, 2 weeks off, this drug has proven to kill off any remaining cancer cells in the body. They are starting Roman at a half less dose because of his TMA issues previously with his kidneys. For this, they will monitor him very closely with labs and urinalysis. Closely for the first month of being on it. After that, if Roman handles this drug well, they may up the dose more. And, with that being said, we get to see Dr. Wagner in 2 weeks after the first round. I hope to get an answer from him then if we can get the central line taken out of Roman's chest. We are really ready for that day to be here. So, things are looking pretty good here. Roman is about to embark on the final phase of this exhausting and horrific protocol. I also want to ask all of you Roman supporters tonight for some prayers...my sister Maureen's husband Chet, is having his 21st knee surgery tomorrow in Cleveland. In association with the Cleveland Clinic. The doc is pretty sure up there, that he can save Chet's leg. However, until they get in there, they will not know exactly what they will do. He is leaving tonight with his sisters while Maureen is staying here with Patrick, Noah and Ciara. (Happy Birthday Ciara:) They need prayers for a safe trip up there with the weather tonight, and a successful surgery that all goes well for Chet tomorrow. And, prayers also needed this week for Corey Nickell, this is his test and scan week just like Roman's last week. So, prayers needed all around tonight. I will update tomorrow about Roman's lab results. God, please pray for Chet to have a safe trip and to have a successful surgery with no unexpected surprises. God, please pray that Corey's test results turn out just like Roman's did. God, please don't let Roman get any unexpected nasty scary side effects with this oral chemo. God, please keep blessing our Roman and all kids fighting for their lives. Love to all you and please be careful out there on the roads tonight and tomorrow. God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 9, 2008 Hello to our family, friends and new friends! Well, today, was a bittersweet day..."Our Angel" Lauren came to say goodbye to Sheridan, Roman, Mike and I. We knew this day would be coming but it came so fast. She will be joining her new husband Joey, over in South Korea where he is stationed. Lauren is actually leaving Feb.15th (next Friday). She has alot of packing to do and alot of goodbyes to give. Please allow me to be very emotional in what I am about to spill...Lauren was with us long before Roman was diagnosed with cancer. She started babysitting for us when Roman was about 5 months old. We lived in Bright Indiana then. We paid her just 5.00 an hour for both kids. When we moved here in December 2006, Lauren was right here, helping us move in and helped put the tree up for the kids. We moved in Dec, 16th. The week before Roman was diagnosed, Lauren sat with the kids so Mike and I could go to a friends party. She knew something was going on with Roman's eye just like us. Then, on April 25th, the world stopped for us. As soon as Lauren found out about Roman, like 2 days later maybe, she came right up to the hospital, looked at Mike and I and said, "I am yours, free of charge, whenever you need me". Little did we know that she would be moving in with us the first week of May to help with Sheridan. But, Lauren, you did so much more than just help with Sheridan. I can remember when the home nurse came for the first time to show Mike and I how to give Roman a shot in the thigh. Lauren was the third pair of hands we needed and we didn't even know we needed them. She grabbed Roman's top half and I grabbed Roman's legs, while Mike gave the shot. I can remember after round 3, Roman got so very sick. In the middle of the night, Lauren was the first to respond to Roman puking, and Mike and I shortly after. That was the hardest night seeing Roman so sick from that nasty chemo. He puked for about 3 hours. All the while, Lauren was right there with us, never leaving our side. Ready to take whatever we threw at her. Lauren get this and take that. Never once complaining. I can remember when Roman spiked his fever for the first time and all the times after that. Lauren knew that meant Mike and I leaving Sheridan to take Roman to the hospital for an automatic 3 day stay in the hospital. All the while, Lauren stepping in as "Big Sis" role and doing whatever Sheridan needed and wanted, knowing that Mike and I could not. Cooking for her every meal, cleaning here at the house, dishes, and de-germing the place before we knew Roman would be coming home from a round of chemo. Just everything and anything, Lauren did it and without complaining and without payment of any kind. See, this is what it means to truly give of yourself. What a legacy and what a story for her to tell her own kids when she has them. And, what a role model for Sheridan and Roman. Lauren, your are the epitomy of what every human being should strive to be. So giving and so loving. We will be forever in debt to you Lauren for saving our family at a time where we needed you the most, not knowing just HOW much we needed you. Lauren and I had many many conversations about how God puts people in our lives for a reason. Boy, did we hit the jackpot with meeting you Lauren. Thank you God for Lauren. Thank you Lauren for being everything to our kids. You will always be "Our Angel". Please everyone pray that Lauren has a safe flight. She has never flown before so, this will be huge for her. And Lauren, we will miss you terribly. But, we will be seeing you on the webcam. Thank you God for technology. My kids will be lost without her. But, a webcam is the next best thing. We love you Lauren! May God bless you and keep you safe always! Love to all of you Roman supporters and thanks for letting me spill about Lauren, she so much deserves all of the kudos and then some:) God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 6, 2008 Hello to our family, friends and new friends! Well, from the most recent update, I am feeling better. Speaking of emotionally and just plain exhaustion from worry. Mike is a man of few words. But, he said he would do an update and he did. Roman is officially DONE with all tests and scans for at least 3 months now. We do have wonderful news on results...GFR was a 111...HOORAY!!!! His kidneys were at a 65 from transplant. His kidneys made a complete and better than expected recovery, like my father in law said this morning..."who says that prayers are not answered, they certainly are!" And, his Bone Scan from yesterday showed more of a decrease in his right eye bone above where the tumor was. His bone growth happened very fast, and now it seems to be catching up and he looks great. Nothing found on the Bone Scan....HOORAY!!! And, the Bone Marrow Biopsy results are NEGATIVE. We still do not have the actual pathology report, but all the docs are on board with the preliminary results that were found. They are really behind in just getting the report done...so no worries of us thinking that's why it's taking so long because they found something in his marrow. That is not the case. So, just a great end to this round of testing and scans. THANK YOU GOD and everyone for your prayers. This has been a real exhausting both emotionally and physically draining time for Mike and I and of course Roman. Not to mention Sheridan who has been sick since Friday night (she is feeling a bit better today). All of these tests and scans are rough on Roman and the waiting for the results are just, well, plain nerve racking. We will have that feeling for the rest of our lives with Roman. No matter what is going on with him in his life...we will always worry different from a "normal" parents worry about their kids. There's just no way around that at all. It is just pure fear. And to let all of you know why I did not update last night...waiting for Roman in radiology for his bone scan to be done, there was a "CODE" called for a child who was also in radiology. It looked like a scene out of ER or something on TV. Docs, nurses, running, carts etc. At least 50 or so of them. Thank God it was not our Roman, but sitting there when all this went down, waiting for Roman was very scary for me. When this happened, he was already back there for about 1 hour and 10 minutes. I made the patient relations lady go back and check on Roman to make sure. I was in tears with fear until I knew it was not him. Then, when it was not him, I worried about the family who's child this was. So, between what happened the other day with the MIBG scan and the waiting and what happened yesterday, I will NOT go to another test or scan by myslef with Roman. I cried with Mike and Mom yesterday telling them that I could not do that anymore. I could NOT handle it. So,whatever we need to do to make sure I have someone with me, we are going to have to do. I will not put myself thru that anymore. I am a people person, I need someone with me for these tests and scans. It is way too scary to sit and wait alone...God forbid anything happen, I could not drive anyway. So, when test and scan time comes up again in 3 months, I hope to have friends, family someone be with me so that Mike can work and Mom could be with Sheridan. WHEW!!!!!!!!!!!! OK, now that all of you know that I was a wreck last week and this week, I know that I will have someone be with me up there just for my sanity in the future. I wanted to let you know also that Roman will be seeing his oncologist, Dr. Lars Wagner, in a week or so to discuss getting him started on the oral chemo(retinoic acid). We have not seen Dr. Wagner since pre transplant because of being bounced to transplant docs. Now we are happy to have Dr.Wagner back with Roman. I also want to ask him when the central line can come out. On that note, I will send everyone some pics of the kids taken in the past two weeks. God, please keep blessing our Roman and all kids fighting for their lives. God, please make Sheridan feel better so she can be her normal, noisy, fireball self again, We miss her! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 5, 2008 Hello to our family, friends and new friends!
Daddy Here. Jody has unplugged for the evening. She had a stressful day. Roman had his last test today for this round which was a bone scan. We still don't know the final results for the bone marrow biopsy or the GFR. Sheridan is still sick. We thought her fever broke this morning but it slowly crept back and she got sick this afternoon. I think she is starting to feel better though. I'm a man of few words so I say good night. Please pray for the very best bone marrow biospy results and GFR results. God, please keep blessing our Roman. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| February 4, 2008 Hello to our family, friends and new friends! I am not sure where to start...it has been a busy weekend and into today so, I will start off by telling all of you that Roman's Bone Marrow Biopsy results are still not in yet. The doc told us it could be either Monday or Tuesday. So, it looks like Tuesday (tomorrow). Talk about being NERVOUS!!!!!! And, we do have some awesome news about Roman's GFR from today...the preliminary results are 110, now that is not final yet. But, if that is the right number and final result...THANK YOU GOD!!!! We should know for sure tomorrow as well. It has been a very busy weekend...Mike and I thinking that after the first week of testing behind us, that we would have an uneventful weekend and much needed rest. Well, Sheridan had something else in mind for Mommy and Daddy. On Friday evening, Sheridan's voice started to get real raspy. By Saturday afternoon, her temp was 99.0. We just kept her from Roman as best we could, and watched her and gave her tylenol. Then Sunday morning when she woke up, she was on FIRE. Her temp was 101.9. We already had plans to go to Mom and Dad's for the day so Dad could see Roman (Mom sees the kids all the time, Dad does not get to). And, Roman loves to play over there and has not had the chance to play over ther alot. Anyway, Sheridan wanted her Mommy to spend the night over there too. So, guess where I was Sunday night...with Sher at Derney and Duppy's. Mike took Roman back home with him. Mike and I had no other choice but to seperate the kids because we surely don't want Roman to get what Sher has. If he did, that would be a major setback for him and then some. So, today, Mike picked me up at Mom and Dad's for Roman's GFR. Mom stayed with Sheridan. After the test, I called the pediatrician and told them our situation. Sheridan had a doc visit at 6:10 tonight. She was tested for 2 types of flu, both of which were negative. I say again...THANK YOU GOD! Her ears and her throat were fine too. So, she just has a really really nasty bad cold. I can't understand why...in preschool she kisses all of her little girl friends goodbye everyday after school. Hopefully, it will run its course and not get Roman sick in the process. We are already germ phobes around here so, when the doc gave us his orders of hand cleanliness...I told him we have that down pat, no need to worry. So, everyone is home tonight together. Sher is still very hot. Poor baby girl, she has been on the couch and not moved one bit. Anyone that knows Sheridan, knows that is just NOT her at all. She could run circles around any of us 100 times and the some. So, please pray that she will be better quickly. We miss you Sher, come back to us and be the bundle of energy and fireball that you are:) Tomorrow, Roman has a Bone Scan at 3:00. We have to be there at 1:15 for an injection. It takes about an hour or so to go thru his body for the scan. Then, we will be officially DONE with tests and scans for at least 3 months. Speaking of that...The Melville family, is needing prayers as well for their son Joe, he's starting his 3 month follow-ups today as well. Joe is NED (No Evidence of Disease). Please pray he remains that way. It has been 2 years for him. So, please pray our last scan day goes well tomorrow. Please pray that Sheridan gets better very quickly. Please pray for the very best bone marrow biospy results and GFR results. God, please keep blessing our Roman. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| February 1, 2008 Hello to our family, friends and new friends! Well, I want to start off with... thank goodness the weather turned out to be not a huge deal this morning so we could get Roman to the hospital by 6:30am. His Bone Marrow Biopsy went accordingly and as expected. He has two puncture holes in the back of each upper hip. So, needless to say that he is in alot of pain. I already gave him a dose of tylenol and he fell asleep right here on the living room floor on his belly. He will be pretty sore this weekend. The doc called just a bit ago and said that the Preliminary at a glance peek at the cells came back NEGATIVE....Thank You GOD!!! We should have the actual biopsy results on Monday or Tuesday. But the preliminary being negative is a good thing for Roman. Also, his CAT Scan results came back today with nothing found...HOORAY!!!! So far, so good for Roman. We will take each blessing as they come. And, remember how they "lost" his urinalysis from the other day, well, apparently they found it and everything was normal. Which is of course, another good thing for Roman. See, prayers do go a very long, long way. A look ahead to Monday, we have to have Roman at the hospital by 8:30 for his GFR kidney function test. The whole thing takes about 4 hours or more depending on the timing of all the blood draws. Roman's last GFR result was not good...it was a 65 from a 67. It needs to be 100 or better. So, please pray his GFR comes back higher than it was. We are pretty confident it will be better because his TMA has cleared up and blood pressures are all back to normal. So, we are going to RELAX this weekend and take a much needed rest from all these tests and scans. Roman is physically exhausted and Mike and I are both physically and emotionally drained. So, everyone please enjoy your weekend and be safe. God, please keep blessing our Roman. Love and God Bless all of you Roman supporters:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 31, 2008 Hello to our family, friends and new friends! Today was Roman's hearing tests and CAT Scan. I will get to the hearing in a bit...but the Cat Scan went well. He had to drink the stuff an hour before the actual scan. He was so very thirsty, that drinking it mixed in his Kool-aid was not a problem. He drank all of it. Within minutes. The scan went real fast. Maybe 15 minutes. Then, when they called Mom and myself back to radiology recovery, I heard Roman crying and nurse Ed was holding him. He was crying and acting NOT like Roman. They said Roman woke up too early and still had the tube down his throat so they had to quickly get the tube out. Poor Roman, his throat is all scratchy right now. Anyway, we may get results of that scan tomorrow at clinic... Roman's Bone Marrow Biopsy is early in the morning. We have to be there at 6:30. He will be the second patient to have a bone marrow biopsy out of 6 or 7 kids tomorrow. So, we are lucky he is number 2. I will ask about the Cat Scan results then. Now, on to the hearing tests results. Well, we knew this day would come and we have not been looking forward to it, but, we have to be positive. Roman has a mild loss in his left ear. Not horrible, but not great either. The right ear is worse. He can hear our conversations, but he has alot of trouble hearing high pitch sounds, words etc. That being said, Roman will be fitted for hearing aids in both ears sometime maybe in March. The news was of course devastating, but, we have to look at the big picture here. With everything this poor child has had to endure since April 25th, 2007, hearing loss of any kind warranting hearing aids, is just not of high importance on the scale so to speak as in having Roman ALIVE, BREATHING, WALKING etc. He is here with us. That's how we have to look at this. He will also begin some speech therapy soon, to ward off any MAJOR problems that would arise when he gets to go to school. The hearing aids along with speech therapy will help Roman alot. Many of you might be asking, why is this happening...well,no thanks to the evil chemo he got, this is one of the side effects. The 6 rounds of chemo Roman got and the high dose chemo before transplant, put him in the hearing aid category. What happens is the chemo drugs are so harsh on the ears, all the tiny hairs inside the inner ear, are all gone. The chemo dammaged them. Those hairs are what helps us hear. Roman, still has about 50% left in his left ear and ZERO left in his right ear. And, before any of you also wonder, the answer is NO...this is not temporary hearing loss, it is permanent hearing loss. I hope that helps with some of the wondering. The main thing here is...Mike and I would go to the ends of earth for Roman and for Sheridan. And to make Roman better, we will do WHATEVER it takes to help him. Hearing aids is just another bump in our long journey. And we will handle this just like we have everything else since April 25th. So, tomorrow, please pray that the morning drive to the hospital for Mike and I will be ok with the weather they are calling for. Also, a HUGE thank you today to Lauren "our angel" for taking wonderful care of Sheridan and taking her to school and picking her up so that Mom could be with me and Roman for the scan today. Lauren, we love you and cannot thank you enough for your support and love for our kids and family. God, please keep blessing our Roman and all kids fighting for their lives. God Bless all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 30, 2008 Hello to our family, friends and new friends! Well, let me start out by telling you the most wonderful news...Roman's MIBG Scan showed NO EVIDENCE of DISEASE.....HOORAY!!!!!!!!!!!!!!!!!!! Your prayers, no matter what faith, have been working for our Roman. And, we want you to know that your prayers mean the world to us. Faith goes the distance and boy did we need faith today. Getting to the great news about Roman was not so great...last night, with all the wind, I did not sleep well at all, neither did Mike. Beside the fact we were very nervous today about results. Sheridan woke up too and came in our bed. I then went into her bed to sleep. The 3 of us in our bed, just don't get it. She was scared of the wind. Roman also cried out in the night too. So, needless to say, the Fariello household was awake off and on thru the night. Today, before Roman'a scan, they told me about 45min to an hour for waiting. Then, while waiting for Roman's scan to be done, the nurse came out and told me "it will be another 45min to an hour because the doc needed more pics of his head and his abdomin." Well, with that news, I felt like collapsing to the floor. I wanted to cry. I begged and pleaded to God to keep Roman safe. That news obviously, did not sit well with me. I immediately thought, Oh My God, they found something". While I was waiting, low and behold Roman's home nurse, Pat, walks by and sees me waiting. I told her they just told me he was going to be in there longer for more pics of his head and belly. She just hugged me. And she teared up with me. Pat, you just don't know what seeing you today did for me. And your hug, was so needed in such a huge way. Of course, I tried calling Mike on his cell, and no reply back. I left him a couple of frantic messages. Later, to find out he left his cell at home. Anyway, in the meantime, I called Mike, of course, Mom, Anne, Aunt Coleenie and Debra Nickell to let them know my reasons for being scared to death about Roman. Mom, Anne and Aunt Coleenie were all very positive with positive thoughts. I called Debra Nickell, for obvious reasons, she and Jim(Corey's parents) are the only people who know what Mike and I were feeling at that in between time of, after the scan and before getting the results. Its the most horrible time. Its the most scary time. The not knowing. The what ifs. That's all I could think about was "Oh God no". The sad thing is Debra and I talked, and we both know that the rest of our son's lives and our lives, will be like this. And for now, its every 3 months for testing and scans. So, its like this horrible roller coaster ride. And for any of you who don't know what it feels like to have your whole world just stop and linger and wait, and for your heart to be so scared to take a next breath, that's how it is for us and any parent going thru just what we are. And, until you experience what we have (hope to God not), you have NO idea to what extent life changes for you at every level. Today, my heart sank and so did Mike's. Only to have it rise above again. Roman is a fighter. He has been since this all began back in April. Mike and I could not possibly imagine life without Roman or Sheridan. The thought of them being taken away from us for any reason, is unthinkable. That's how we make it thru each day. That's how we live our lives. Like there's no tomorrow. Heed the warning from me and live life that way. Speaking of tomorrow...Roman has a hearing exam at 11:00 and a CAT Scan at 2:00. I will update tomorrow with results if I have any. Enjoy the pics of Roman. He is a living miracle! God, thank you for blessing our Roman with No Evidence of Disease in his scan. God, thank you for giving Mike and I two of the most precious gifts in the world. God, please keep blessing our Roman and all kids fighting for their lives no matter what the disease. Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 29, 2008 Hello to our family, friends and new friends! Well, let me start out by telling all of you that I forgot to share some good news from yesterday's clinic visit with the doc. Roman no longer has TMA and no longer is on ANY blood pressure meds. HOORAY!!!!!! The doc told us that she was very happy to see that the TMA was cleared up and his blood pressure was back to normal. Roman is currently NOT taking any medication except for Bactrim, as a preventative maintenance 3 days a week for pneumonia. Other than that, he's off all meds. That is a great thing:) And, well, how do I start telling you about our visit today...needless to say that I THOUGHT it was going to be a painless, uneventful visit for Roman to get his injection for tomorrow's scan...boy oh boy, was I wrong!!!!!!!!!!!! Roman and I get there 20 minutes before we are suppose to and in their parking garage, there was not one single parking space available. I drove around for over 25 minutes. To make a long, stressful story a short one, I ended up telling the valet guy that "look, my son has cancer, he is suppose to have an injection today for a scan tomorrow, he needs it TODAY, and there were no parking spots left". He must have felt sorry for me and took my keys and parked me right in the circle. I am sure he hears tons and tons of sad sob stories, but Roman needed to get in there. He got his injection and that went fine. On the way home, I found out that Roman's urinalysis from yesterday, had been LOST. This is the third time now they have lost his urine. I do not know how they could possibly lose a blue and clear urine cup with a label on it with all of Roman's info, with urine in it!!!!!!!!!!! Needless to say, after the parking deal, that news just pushed me over the edge. I don't know who runs things there in their lab, but it needs a MAJOR over hauling. And, their computer system needs a MAJOR over hauling too. That is part of the problem with labs being lost...they do not get "activated" in their system and apparently, they just throw it away if there is nothing in their computer for that patient...that needs to be addressed, along with the parking there at the hospital too. It is only Tuesday, and I am already stressed out over that hospital. So, of course, we have no urine results. And, guess what, I am not sure when they WILL get any more urine from Roman...it will be on my time and my free will, not theirs. I am so upset right now. I know there are alot more things to be upset about but c'mon, they need to get their "stuff" together!!!! Ok, I feel a bit better for venting and letting it out. So, tomorrow, is a HUGE test for Roman. He has not had an MIBG Scan since before September. So, please pray that he does not "glow" anywhere at all. We are confident that he won't. On that, I will thank all of you for allowing me to speak freely and vent. What's that old saying...Mother said there would be days like this!!! God please keep blessing our Roman. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 28, 2008 Hello to our family, friends and new friends! Today, Roman had his labs done and a urinalysis done as well. Roman's counts are ok...just ok. His hemoglobin is 10.1, platelets 214, white blood cells 2.1 and his ANC (ability to fight off infection) is 1220. He has a very long way to go with his numbers. I asked today about the "restrictions"...the doc told me the food restrictions were basically over with, but the going out in public and having visitors is still a big NO. I asked the doc how long does Roman have to be in "isolation"...she said until he hits the 9 month post transplant time frame. That is when Roman will have immunity function testing. So, we are looking at around June or July. Specially now, with flu season and everyone being cooped up, we really have to be careful. Roman will NOT wear a mask for anything. I am not sure that a mask would help do anything anyway. When spring comes and warmer weather, at least we can go outside a bit. The reason we have to be careful, to remind everyone, Roman lost ALL of his immunity with his bone marrow transplant. He lost ALL of his immunizations from birth as well. He cannot fight off ANYTHING. And, we really do not want Roman to have a setback. So, that leaves us with no other choice but to remain status quo and do what we have been doing. Roman's renal labs and liver panel both came back normal and we do not have the urinalysis results yet. Tomorrow Roman just has to get the MIBG injection at 2:15. This injection is for the next day's MIBG scan...this is the scan specifically for neuroblastoma and the cancer cells "glow" if any... We are confident Roman will NOT glow ANYWHERE. Today, Mom went with me and Roman and Lauren "our angel" stayed with Sheridan. Sheridan had a blast with Lauren. She always does. Lauren we love you:) Please keep praying for Roman as you have been. We make it thru each day because we know people like you are supporting us. God, please keep blessing our Roman. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 27, 2008 Hello to our family, friends and new friends! Well, I wanted to let everyone know that yesterday, Roman hit a bit of a "milestone" in the bone marrow transplant world...he hit day +100 yesterday. I cannot believe that he got his own stem cells put back in his body 100 days ago. We are very happy with how time has flown by for us. I am really not completely sure what day 100 truly means to the docs, but I do believe that there may be some "restrictions" that could be lifted, and I intend to find out which ones tomorrow at Roman's clinic appointment. Roman has had some food restrictions (we know all about food restrictions due to his peanut allergy anyway) , and of course visitor restrictions. Roman will NOT wear a mask so, we are really in isolation. I am hoping some of that will be less now since the +100 day milestone. His counts are looking great, at least they were last labs. He will have labs and a urinalysis tomorrow. His labs should be just fine. If anything, numbers getting better and better with time. I will send results of labs when I get them. Tomorrow should be an ok day for us, we hope:) Still need all the prayers you have for Roman this week and next. Test and scan week for Mike and I is and always will be for us a very stressful time, waiting for the results and praying for the best results. We will forever be with worry over Roman for the rest of his life with all the tests and scans he will have to endure. How could we NOT worry. We do know that Roman has SO many loving people praying and pulling for him, he cannot go wrong with that:) I will close with a thank you to all of you who put Roman on the top of your prayer lists. God, please keep blessing our Roman. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 24, 2008 Hello to our family, friends and new friends! Let's get right into the pics I sent...Roman has got to be the most beautiful little guy in the whole wide world, just look at his face when he is sleeping...absolutely adorable! (ok, I am his Mommy:) Then, he loves these donuts from our local pizza place here in Hebron. The other pic is of Roman and Sheridan being cuddly as brother and sister. And, last but surely not least...did all of you know that we had an artist in our house????????? Sheridan was SO very proud of her octopuss she made today in school studying the letter O, she hung it right on the light switch as soon as she got home. I must say, she did a way better job than I ever could! We love you Sheridan Patricia!!! Ok, now onto Roman's schedule for next week...and unfortunately, into the week after that!!! I will update as I always do with results if I have them and what test is for the upcoming day and time. But here is a look at what's in store for us...
Monday, 28th Clinic visit and labs at 12:15
Tuesday, 29th MIBG Injection 2:15
Wednesday, 30th MIBG Scan 8:30
Thursday, 31st Hearing Test 11:00 and Cat Scan 2:00
Friday, Feb. 1st Bone Marrow Biopsy 6:45am
Monday, 4th GFR (kidney function) 8:30
Tuesday, 5th Bone Scan 1:15
So, there you have it. Yes, we will be living at Childrens, or at least it will feel like it. Prayers, Prayers and more Prayers are needed for Roman so that ALL of his testing and scans come back as NED, which translates into No Evidence of Disease. That is the very best outcome we can hope and pray for. I will keep all of you posted as I always do. God, please keep blessing Roman as you have. Please keep this evil of a cancer AWAY and OUT of his little body for good. God Bless all of you and many thanks for your prayers in advance...we need them. Jody, Mike, Sheridan and Roman Fariello:)
|
||
| January 22, 2008 Hello to our family, friends and new friends! We hope all of you had a nice weekend...we did:) Just doing NOTHING!!!! I have a couple things to share with all of you Roman supporters. First of all, "Our Angel" Lauren, has let me know that her wedding pics are up on Mikki's website. And to Mikki...you are THE most talented photographer EVER!!! The pics are just amazing! We love you Mikki! And, I wanted to share with you that Aunt Jenn's brother Randy Wolf, had a group of his friends help with our spaghetti dinner back in Ocotober, and of those friends, Mike Cummins, who works at Union Central Life Insurance Company, nominated Roman and our family to be the beneficiary of their Christmas Angel Project. They created a cookbook and called it "Heavenly Recipes". They made it available in hard copy or cd and asked for a $10.00 donation. They sent us a beautiful letter and raised $1,040.00 for Roman and our family. We want to thank Mike Cummins for telling Roman's story and his eagerness to help us. We want to thank the Union Central Life Insurance Company offices in Cincinnati and also in Lincoln Nebraska...your support has overwhelmed us. We are touched by your kindness and Roman and our family are proud to call ALL of you a Rescue Roman Supporter! It is people like yourselves that make us realize we are not alone thru out this journey. We are truly honored that we were chosen as the family you helped out. Today, we are enjoying a snow day from pre-school. Sheridan and Roman are playing and eating and playing and drinking and then eating again. It is my most joy of all joys, being able to see them play like they are suppose to be playing. Just like brother and sister. No word yet on times for next week, as soon as I get them, I'll let you know. Until then, please keep praying for the Houston Family. Love and many thanks to all of you! Roman and our family are quite blessed! God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 19, 2008 Hello to our family, friends and new friends! Well, Roman has finally completed his 12th day of radiation...HOORAY!!!!!! Mike took off from work to be with Roman and I for this special day in Roman's protocol. He handled all 12 days of radiation like a trooper. And, with just poopy diapers, we will take that over being nauseated any day. His nurses there at the Barrett Center got him a few good bye presents...he got a real cute stuffed doggy (he loves dogs), a real big dump truck and a really cool race car track with bigger cars that you shake and then let go on the track. Sheridan and Roman both will love that present. Mike and I would like to say a HUGE THANK YOU to Michelle and her team of nurses at the Barrett Center for taking such great care of Roman and being so nice and kind for getting him the presents. Thanks to all of you in the back where Roman says..."WEEEEEEEEEEE" and then closes his eyes. While we were there yesterday, I got to take two pics. One pic is Roman sitting next to his friend Joey Gruber (original brain tumor, relapsed and now in top part of spine). The other pic is Mike holding Roman and Valisha holding beautiful Victoria. I so badly wanted a pic of Victoria so all of you Roman supporters could see her right eye. That's what Roman's right eye looked like. And Victoria's left eye is starting to show signs of trauma too. Just please please continue to pray for the Houston family. They need more prayers than ever. She is in so much pain. All you have to do is look at that pic and see it. After the Barrett Center, we had to go spend the afternoon at the Day Hospital for IVIG (immunity booster). It was a 3 hour infusion. We left there at 5:30. The whole day, Aunt Coleenie kept Sheridan for us. Aunt Coleenie said that Sheridan is way too funny...they had a blast together. Going shopping etc. and letting Sheridan of course pick out any kind of candy that she wanted!!! Thanks to Aunt Coleenie for taking care of Sheridan so Mike and I could be with Roman all day. We love you!!! And, then, Aunt Coleenie dropped off Sheridan to Mom and Dad's because they were going to watch both kids for Mike and I so we could go to dinner with the Nickells. Which we did, and Jim and Debra (Corey's Mom and Dad) we had a blast, we so needed to LAUGH and we know you did too. Corey was at Day Hospital too for IVIG just like us. After dinner, we came on home to relieve Mom and Dad. Mike's cousin Kenny stopped by to drop off an envelope. Mike got an email about the Rescue Roman Basket Raffle. It was a HUGE success! Mike's co-workers were able to raise $1,255.00. WOW!!!!!! One of Mike's co-workers will call all the winners to let them know they won. Mike and I would like to thank EVERYONE who purchased a ticket. And, to truly thank Mike's co-workers at Perfetti Van Melle for their idea, their time, their energy, their support and their love for wanting to help our son Roman and our family. The baskets were all beautiful and so awesome!!! We hope all the winners will enjoy their baskets!!! Thanks Perfetti Van Melle...you have helped to Rescue Roman again!!! Love to all of Mike's co-workers!!! So, with the visit yesterday at Day Hospital, we talked about what's next for Roman. He will have next week as a break. Then on the 28th of Jan., he will start having the tests and scans all over again. He will have a Cat Scan, Bone Scan, MIBG Scan, Bone Marrow Biopsy, GFR (kidney function test) and a hearing exam. I am pretty sure that I covered all that he will be having. I have no exact times or days of what will be happening when, but as soon as I do, I will let you know. On that note, enjoy your weekend. Keep the prayers coming for the Houston family. Stay Warm. And God, please keep blessing our Roman and all kids fighting for their lives. Thanks again to all of you for your love and support! You will never know how it makes us feel:) God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 17, 2008 Hello to our family, friends and new friends! Well, Roman has his 11th treatment today. And, of course, not without waiting again. Roman did just fine.There are 6 kids getting radiation now. While we waited today, in walked another family, with another sick little one like Roman...only this was a girl. The family sat right by us in the lobby. We of course started to talk and she asked me what type of cancer Roman had...I told her Neuroblastoma stage 4. The mother told me...that's what Victoria has too. We told each other our stories...and you would never believe me if I told you that alot of Victoria and Roman's stories are very similar. Roman fell on a toy, she fell out of bed. It was Roman's right eye, it was her right eye. Roman's tumor in his belly was very small, her tumor in her belly was very small. Roman was 18 months old at diagnosis, Victoria was 18 months old at diagnosis. But, that's where their similar stories end. Roman is on his way to do oral chemo as the last part of the protocol. Beautiful Victoria is on her way to HEAVEN. I am hardly ever at a loss for words, but today I was. Forgive me if I am emotional, for it has been a very emotional day. Sitting across from a Mom and family who is clearly losing this battle for their daughter, just killed me inside. Knowing that we are sitting across from them, with Roman walking, talking, moving etc. The family was there, Dad, Mom, brother, sister and of course Victoria. Her Daddy held her the entire time we were waiting in the lobby. Her sister is 12 and her brother looked maybe 10. Victoria is 3 years old. This is her 3rd relapse with Neuroblastoma. Recent scans showed that her cancer has spread everywhere. She has 3 new spots on her head. Theirs is a long painful journey, too long for me to tell you everything, but I will give all of you their carepage so you can read about Victoria. I told the Mom that I wanted to cry with her and for her...she said, "No, we have come to terms with the fact we know we are going to lose her soon." She also told me that this round of radiation she is getting is to give them 1or maybe 2 more months with Victoria, because without the radiation, she would go to heaven sooner. I cannot tell you how difficult it was for me to sit there with them knowing Roman has followed the protocol and Victoria could not for circumstances you will have to read about. I have been so emotionally moved and drained today knowing that I got to see this beautiful little girl, with the same disease as Roman, losing her battle and dying. As a mommy, I cannot express what I feel or felt for Victoria's Mom and whole family.I just flat out cried and have been ever since. Victoria is now on morphine to make her comfortable. I will see the family again tomorrow for Roman's 12th radiation treatment. Victoria's 3rd. I have asked Victoria's mom if it would be ok if I take a pic of Roman and Victoria sitting next to one another. She of course said yes. So, hopefully that pic will get taken tomorrow. I must warn all of you, that Victoria's eye looks like Roman's did last April. It made me feel very uneasy about seeing her eye like that because it took me right back where Roman was April 25 2007. I cannot tell you how helpless I feel for the Houston family. And, how I wish I had all the answers to why one child gets to thrive, eat, run, play, talk, hear, and why another child gets to have a one way ticket to heaven. I of course called Mike on our way home, and just cried and sobbed with him. Roman was supposed to go to the Day Hospital today, but that did not happen and it's not important anyway. Just know it will happen tomorrow as planned for his IVIG (immunity boost). I hope all of you take from today that life as we know it, can and does change with a blink of an eye. Please just hug your kids, love them, tell them you love them, kiss them, hold them and never let them go. Please please pray for Victoria Houston and her family. They are from Knoxville Tenn. Her carepage is just her name victorialovehouston So, go to www.carepages.com and please check out her carepage and please pray for her that she does not suffer and that she's not in pain. God, please keep blessing our Roman and all kids fighting for their lives. God, please keep Victoria in the palm of your hands. I will update tomorrow. Love to all of you! Jody, Mike, Sheridan and Roman Fariello |
||
| January 16, 2008 Hello to our family, friends and new friends! Well, only 2 more treatments to go...HOORAY!!!!!!! Today went fairly well, of course with the exception of WAITING. I know it can't be helped sometimes but UGHHHHH!!!!!! The Barrett Center nurses/techs there are really good with Roman. They have been since the beginning. They have asked us what Roman likes as far as toys etc. because at the end of his treatments(Friday), they like to give the kids something for going thru what they have just endured. So, I told them any cars, trucks, Wiggles, Blues Clues and anything with doggies. I have enclosed pics of the kids. Roman just got a dressing change and a diaper change and was getting dressed for bed last night. I took the pics because people have been wondering what the markings look like. It's not everyday you get to see someone marked up for radiation, much less a 2 year old. Roman has 6 markings. One on each side of his tummy, and 4 on the front of his tummy. One of the markings fell off yesterday which was replaced today...so you can only see 3 on the front in the pics. Also, the pic of Sheridan is priceless because she was so mad that she could not do a flip and Buddy could. So, she pouted and folded her arms together and there you have the Fariello Look!!! I also got some news today that Roman needs an IVIG infusion on Friday after radiation. IVIG is to boost his immunity. His was at 538 and it should be 750 or better. So, we are off to Day hospital at Childrens on Friday. The infusion probably will take about 3 to 4 hours. It will be good though because Debra Nickell will be there with Corey getting the same infusion. We will get to visit and chat. So, that is all I have for now. I will update again tomorrow about treatment #11. God, please keep blessing our Roman and all kids fighting for their lives. Thanks to all of you and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 15, 2008 Hello to our family, friends and new friends! 3 more to go...Roman had his 9th treatment this morning. All went well except for the waiting an hour before being taken back. It's getting real old...I am just relieved we have only 3 more to go. Also today, the "sleepy doc" had to give Roman a bit more "sleepy meds" because he said Roman was wiggling around and moving some. So, he is probably getting "used to" going to sleep so much everyday. Anyway, he is still doing fine. While we were waiting to go back, we met a guy named Mike. He is also getting radiation because he is battling squamous cell carcinoma. He showed Roman his bald head and Roman showed Mike his. Mike is a father, so seeing Roman (you could tell) hit him a bit. He also told Roman that he was a wimp and Roman was a trooper and was strong and tough more so than himself. It was nice meeting Mike today. We also met an older man by the name of Sam Mikinney..he was so moved seeing Roman, he just had to come over to us, and say a beautiful prayer over Roman and for our family. It touched me. He was so nice. He said he had alot of grand kids and that it was his calling...to say prayers. Well, Sam, it was nice meeting you and God Bless you for reaching out to Roman and myself and our family. Your prayer was beautiful! Thank you! So, even though we had to WAIT, it was not a lost cause because we got to meet some really nice people today. So, after radiation this week, Roman will have next week off and then it's the start of ALL his scans and tests again, around the 28th. So, big time prayers needed for ALL his scans to be clean and clear of cancer. Also, please continue to pray for little Joey(little guy from radiation) his Mommy talked to me today and he has scans coming up too. Hopefully the radiation is working for him because his tumor is on his upper spine and they don't want the tumor to press against the spine because that will paralyze him.Joey is 3 years old. Just please pray for his family. That's all I have for now so I will update tomorrow. Until then, God please keep blessing our Roman and all kids fighting for their lives. Thanks to all of you for your love and support. Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 14, 2008 Hello to our family, friends and new friends! Well, treatment #8 is done and over with, and 4 more to go this week. This morning, Mike took Roman so Mom would not have to get out and come over before the birds in order for us to leave on time with Roman. His appt. was for 8:30, so we have to leave here by 7:15 to beat the rush hour traffic. I stayed here with Sheridan. Roman did just fine again. The doc asked Mike if Roman was feeling any nausea...Mike told him no. The doc said that would be one of the side effects that could start happening any time now. Thank goodness, Roman is dealing pretty well with the radiation. He has had some poopy diapers, but, that could be from drinking alot. He drinks alot and eats alot. More so than his Sissy does. I wish she would eat a fraction of what Roman eats all the time. So, we hope you enjoy the pics I sent. They are just of the kids playing dress up and of Roman watching The Wiggles on the little portable DVD player that Santa brought them for Christmas so they don't have to fight over the TV and who's watching what. And, yes everyone, that is HAIR you see on Roman's head. It's coming in full force. His eye lashes and eye brows are in too. Just one more milestone into having Roman look like he did pre cancer. Only this time, his right eye looks AMAZING!!!! No sign of the tumor that WAS there. He is doing just fine. On that note, I will update tomorrow again with radiation #9. Mike and I are so glad it is almost over. Thanks to all of you for your love and support. It melts our hearts to know that you look forward to reading the updates about Roman and our family. He has quite a following thanks to all of you. God, please keep blessing our Roman and all kids fighting for their lives. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 11, 2008 Hello to our family, friends and new friends! I knew that when yesterday went smooth...that it was way too good to be true. Today, we even had to be there earlier because they called us yesterday and told us they needed to move Roman up...I said of course...so we had to be there at 10:45 not 11:30. Well, when we got there, I saw there were other families with kids there as well waiting in the lobby. Including Joey and his Mommy Stacey. She told me her appt was for 10:30. Well, with us chatting, the nurse came out to tell us that the "sleepy doc" was not there yet. By this time it was closer to 11:00. We waited and waited and waited. And, by 11:45 or so, they took Joey back. We were then to be next after Joey. Then, the other 3 families would follow Roman. With all 5 kids there waiting for the "sleepy doc", the nurses were fit to be tied just like us parents. They have to wait too for the doc to get there from Childrens. The nurse told me she was going to ask for a meeting because something must be done to stop all this waiting for a "sleepy doc" to take care of these 5 kids who needs radiation. I hope by Monday it will better. But, as in the Fariellos track record with appts...probably NOT!!! I am just thankful that Roman has only 5 more treatments to do. There are families there that have 38 or so treatment total to do. So, we are lucky to have only 12 total. Roman got taken back at noon. Left 20 min. later. We got Roman's lab results back...everything looked good except his hemoglobin...it was at 9.4...so, the BMT doc said for us not to worry about that number since Roman only has 5 more treatments to go. So, that resulted in him NOT needing a blood transfusion. HOORAY!!! Still don't have ALL the labs back yet, but what is back is pretty good. So, we will take that info and be status quo with things. Also, after radiation, there will be a time frame to wait about 2 weeks to let his body "heal" and then we move right into the week of ALL his repeated tests and scans. These have not been done since before transplant in October. So, I will let all of you know when things happen at what time. But for now, we will take this time after radiation and enjoy a much needed break from going to Clifton everyday. After the tests and scans are done then Roman will start the 6 months oral chemo. So, that's where we are now. Roman is such a strong little guy. He is a doing remarkably well with the radiation. Mike and I were so scared about this...it is the unknown and what to expect and not to expect and specially down the road in Roman's future. We felt like we were throwing him to the wolves again. We know it's to help keep him alive and to survive this daggone cancer. I am just glad that he only has 5 more treatments to go and then we are done. One more part of this nightmare done and over with. On that note, everyone have a great weekend. We will:) God, please keep blessing our Roman and all kids fighting for their lives. Thank you all for your ongoing love and support for Roman and our family. It does mean more than you will ever know. God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 10, 2008 Hello to our family, friends and new friends! Today, was the half way point for Roman. 6 down and 6 to go. Today, went much smoother than yesterday. Lauren, "Our Angel" came over today to sit with Sheridan and that freed Mom up to go along with me to take Roman for radiation. When we came back home, Roman's home nurse, Pat, came to draw labs and pick up his urine sample. I should have lab results tomorrow. Pray that his hemoglobin is holding its own at 10.0 or above. Hopefully, he won't need a transfusion. I also wanted to personally thank my brother Michael for his help with all of Roman's Yahoo supporters. He has created a group that will contain all of the yahoo addresses. He will send out an invitation to all of the Yahoo users to join the group, so they will get my Roman Updates. As many of you know, I am not a computer person...I am lucky I can send an email, check email and do a Roman Update and even pics. That's about ALL I can do. So, thanks to my brother Michael for his computer help in making sure everyone will still be able to get the updates. Thank you Michael:) And, this is just a reminder to all of you who can donate blood or platelets...both are still very much needed. And, to all of you who have never donated, it is never too late to save a life. Specially a childs life at Childrens Hospital. I wish I could personally thank all of the people who have helped Roman with as many blood transfusions and platelets that he has needed to survive. It is so important to donate, so if you can, please do:) On that, I will end for today. I will update tomorrow with lab results hopefully. God, please keep blessing our Roman and all kids fighting for their lives. Love and thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 9, 2008 Hello to our family, friends and new friends! I wanted to let everyone know about 13 or more of our Roman Update followers who have a Yahoo email address, have not been getting the updates from me. I have the reason sent back to me that states "Connections not accepted from IP address on Spamhaus PBL". So, that is something on the Yahoo end of things and not my end from my Shivers@insightbb.com account. Please, if you know someone on my list who has a Yahoo account, let them be aware of the problem and they will have to go to RescueRoman.org for my updates from now on. Thanks and God Bless! Good Night! Jody:) |
||
| January 9, 2008 Hello to our family, friends, and new friends! Well, Roman's 5th radiation treatment happened today...but not without Mommy getting a bit ticked off. I have been patient...until today. Roman was scheduled at 11:20 for his treatment. We got there about 11:10 or so. We follow Joey (the little guy I told you about yesterday). His appt. time is supposed to be at 11:00. Well, both of our boys had to wait, and wait and wait and wait. Mind you without eating or drinking. It was over an hour for both Roman and Joey. The reason they gave us was because...the "sleepy doc" was behind and they decided also to get a new patient (child) from Childrens...this was his first visit, so of course the first visit takes longer because of markings etc. So, the powers to be decided to put the new patient before Joey and Roman. Which, believe me, did not make either of us happy Moms...it's not the fact that the child got seen before Roman and Joey, but the fact is that they did not even come out and tell us they were doing that or even running that far behind. If I had known that, Roman could have at least had some juice or something knowing it was going to be 1:00 before we would even be waking up from "sleepy meds". It's just so frustrating. I am so glad tomorrow is Thursday. Roman has 5 down and 7 more to go. Also, the raffle at Mike's work (PVM) will be extended until Jan. 18th. That will be the day of the drawing. So, if you want tickets yet, you still have time to get some. I am asking that you have your tickets to us by Jan. 17th so Mike can hand them in on the 18th for the drawing. If you would like tickets or have any questions you can email me, or call Anne at the Rescue Roman Info line. Pray that tomorrow goes smoother so Roman and Joey both do not have to wait THAT long to eat or drink. Thanks to all of you for your ongoing love, prayers and support for Roman and our family. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 8, 2008 Hello to our family, friends and new friends! Roman now has treatment #4 done and over with. 4 done and 8 more to go. He is doing just fine. So far so good. Today, while we were waiting for our turn, in the lobby I met another Mom with her son there for radiation. His name is Joey and he is 3 years old. November of '06, he was diagnosed with a brain stem tumor. Had chemo and radiation a year ago to battle the tumor. Just recently, since Nov. '07, his Mommy told me it was now in his spine. So, he is there for radiation until Jan. 31st. By far, many many more radiation treatments than Roman. I just want to ask all of you Roman supporters out there to please pray for Joey and his Mommy and Daddy. Joey is there only child. It was very strange at first because when we were sitting there, Joey's mom and I smiled at each other...the kind of smile that only Moms like us with kids like ours battling cancer. Her smile to me spoke many many words and feelings. Just like mine did to her I am sure. I am glad we got to meet someone there. There are not too many kids there for treatments. Roman is 1 kid of 4 going there right now. So, it's nice to have another Mom there who knows what's going on and someone for me to chat with. So, please just say a few prayers tonight for Joey. And, about the Rescue Roman Raffle at Mike's work...they are considering pushing back the turn in date, which will in turn push back the drawing date... I will let all of you know when and if they choose to do this. Please enjoy the pics of the kids here at home playing and being "normal" as "normal" can be. As I told my friend Deb today on the phone...there's nothing NORMAL about me taking Roman everyday for a radiation treatment...nothing normal about it in any way, shape or form. How many parents do you know that actually get up and take their 2 year old child for radiation??? I bet it's not very many, if any at all... He's 2, he should be driving back and forth with me to take his Sissy to and from school, we should be going to Big Boy and coloring in our booth, we should be going to the mall and throwing pennies in the fountain, we should be playing with other kids his age and playdates while Sissy's at school, etc. I long for all those days to come. I know our time will come. As I have said it all before, I have no room to complain about anything...specially now that we are praying for a new little guy (Joey) with a different kind of cancer...knowing he has to have many many more radiation treatments than Roman. We can handle 12. Love to all of you and thanks for your prayers and support. God, please keep blessing our Roman and all kids fighting for their lives. Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 7, 2008 Hello to our family, friends and new friends! This morning Roman had his 3rd radiation treatment. He is a trooper. He already "knows" the routine. We walk in, he holds my hand, we sit in the chair, they scrub one of his lumens, and then inject him with his "sleepy meds". He is soooooo cute...right when he is about to drift away, he says "weeeeeee" and then closes his eyes and goes limp. The whole process takes about 15 or 20 minutes. Then he wakes up and we leave. It is really quick. And, he does so well. I wanted to let you know that we have 3 down and 9 more to go. Keep the prayers coming for Roman. He still needs all of the prayers that you send his way. I will update tomorrow on treatment #4. Love to all of you and God bless. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 4, 2008 Hello to our family, friends and new friends! Today, Roman had his 2nd radiation treatment. He did just fine with it again...except today we had almost hour wait to even get started. They were running behind...imagine that with the Fariellos!!!!!!! It's just bad for Roman because he does not get to eat or drink ANYTHING until after the treatment when he wakes up. That's ma VERY long time, considering he was awake today at 9:00am. Let me tell you...telling a 2 year old they cannot have anything to eat or drink is not an easy task by any means. That part of today was not good. I guess we have learned to take the good with the bad. The bad being our alternative...Roman not getting the treatment he needs so desperately to kick neuroblastoma out of her FOR EVER!!!!!!!!! So, we will make it with him fussing about food and drink. Whatever it takes:) And, I have more great news to share...we got Roman's urinalysis results today and he has NO blood in his urine at all, HOORAY!!!!!!! He finally has good urine. No nothing bad with his urine results. He is doing fine. That makes radiation for me a bit easier to take and handle knowing he has no blood in his urine. And, his blood pressure today was 95/55. Perfect for someone his age. We could not be happier. He is finally healing with the TMA it looks like. The BMT doc even told us yesterday to not give him his BP meds and his good reading was without meds. HOORAY!!!!!!!!!! So, we have a break this weekend and then right back for treatment #3 at 8:30 in the morning on Monday. Speaking of weekend...I want to share more good news with all of you...Mike and I will be married 7 years tomorrow:) I cannot believe how the time has flown by. Allow me to be a bit cheeeeeeeeeeeeezy for a moment...I have got to be one of the luckiest women in the world. I have the very best husband anyone could have. I know I will probably embarrass Mike, but, people need to know what kind of man he is. Mike is the most loving, supportive husband and Daddy to Sheridan, Roman and myself. Without him, my life would not be full. He is my rock, my calmer side and my strength and my safe place. I am truly blessed by having Mike as my best friend and person to grow old with. Without Mike, I would not be as strong as I am for Roman, his cancer and our daughter Sheridan. I feed off of his strength. Thru Roman's transplant, Mike and Roman both were the epitomy of strength. Honey, I love you with all that I am and all that you inspire me to be. I have the most loving respect for you. I love our home, our family life, our family unit and I would not have it or want it any other way. There is a verse in a song...I v'e got all I've waited for, and I could not ask for more"...that's how I feel:) I love you Mike Fariello!!! Happy 7th!!! Now, that I have embarrassed him to the extreme...God, thank you for 7 beautiful years together and please give us many, many more together. God, thank you for keeping Roman's labs good and for the healing of his kidneys. God, please keep blessing our Roman and our family:) Have a good weekend everybody! Love and Thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| January 3, 2008 Hello to our family, friends and new friends! Well, it finally happened today...Roman had his first radiation treatment. He is doing just fine. Not a problem with anything...except he was very thirsty this morning and could not have anything to eat or drink until after radiation because of being put under. Roman did just fine with the first treatment and getting his markings. If I counted his days correctly, Roman is day +77 from his transplant/rescue. His lab results from this morning were really good. He did not need any blood or platelets etc. He is doing really well. HOORAY!!! He has not had any labs the past 3 weeks due to the holidays. So, we were really happy and excited to hear his labs looked great! We do not have the results of his urinalysis just yet. We will not know how the kidneys are doing until after radiation, I am assuming. They will probably do ALL the tests and scans one more time as we head into the oral chemo phase after radiation. The pics were taken today right before Roman fell "asleep" in Mike's arms. The one pic his eyes were looking really heavy. So, here is the schedule for radiation...weather permitting...on Mondays, we have to be there at 8:30 in the morning and Tuesdays thru Fridays we have to be there at 11:30. One treatment down, and 11 more to go. No radiation is done on the weekends. Weekends are "free". So, I will update tomorrow to let all of you know how he did with treatment #2. Thanks to all of you for your prayers and support. Roman is a very strong little guy and Mike and I would go to the ends of the earth for him and Sheridan both.What ever it takes to help him, we will do it. We are so proud of him and honored to be his parents.God please keep Roman's kidneys safe so he can get the treatments he needs. God, please keep blessing our Roman. God bless all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 31, 2007 Hello to our family, friends and new friends! Well, this is almost the last day of the year. Right now it's 11:41pm. I cannot believe that 8 months ago, our lives changed in a matter of seconds with the news of Roman's cancer. It has been a very long and mentally draining 8 months. A rollercoaster of emotions. I, for one, am ready for 2007 to end. I know Mike is too. We are ready to tackle 12 rounds of local radiation starting on Jan. 2nd at 8:30am at the Barrett Center. We know there are many risks in doing radiation with Roman's kidney, but, as we play the cards we have been dealt, we have no other choice but to go ahead with the radiation. We have to believe that Roman will make it thru this just like he has everything else. He is so strong. I look at him and I still can't believe that our son has a deadly cancer. He runs around here like there's not a thing going on with him. Playing with his Sissy and fighting with her over every toy:) His energy amazes me...his tiny body is a mighty little power house of strength and endurance...what he has been thru this year, and what he has had to endure...going thru everything with a smile on his face. I cannot begin to tell all of you how much my little 2 year old son has taught me. He has definitely taught Mike and I about... how love can endure the most horrific circumstances, how pride has been tossed out the window and to let people help us, how to accept the unacceptable and the unthinkable, how just when we think we have it bad...someone somewhere out there has it far worse, and how life changes as we know it...so live it happily everyday, and enjoy every moment you have. I cannot say 2007 was ALL bad...Mike and I have met some truly amazing people and strangers that have helped us with Rescue Roman. To all of you, there are SO many of you, we thank you for making this year more bearable knowing we have your love, help and willingness to go the distance for our son and our family. Without all of you Rescue Roman supporters, Mike and I would not feel loved and fulfilled like we do. We truly hope and pray that all of you have a healthy and blessed new year. Keep the prayers coming. I will update Wed. night to let all of you know how Roman is doing from his first radiation treatment. God, please keep blessing our Roman into 2008. Happy New Year from our hearts to yours! Jody, Mike, Sheridan and Roman Fariello:) Be safe and drive safely if your going out and about!!! |
||
| December 29, 2007 Hello to our family, friends and new friends! Last night, a beautiful event took place..."Our Angel" Lauren, got married to Joey Brown. They both looked absolutely happy and amazing together. I told Lauren she would look beautiful in a brown bag!!! She is just gorgeous! We knew she would make a beautiful bride...not just on the outside, but on the inside as well...we know what she has done for us and what she will conintue to do for us thru radiation, and that's what makes her so beautiful:). Joey came home about 3 or 4 days before Christmas and he will leave on Jan. 7th to go back to Korea. Lauren will be staying here until March. Then, she will be going to Korea to join her husband. As you know, that will be the day that her Mom Janine and myself, will ball like a baby seeing her get on that plane. Lauren is in every sense of the word our adopted daughter. We want her happy and it looks like Joey completed that happiness for her last night:) We love you both and wish you nothing but the best a married life can offer. I told Lauren that together, she and Joey can move any mountain. Sheridan was in the wedding and looked so daggone adorable. She just adores Lauren and was so excited to be in her wedding. And, yes, the pic of Roman all dressed up...well, Sheridan puts him in certain dress ups thru out the day here at home and he wanted to wear the red ruby slippers. So, Roman lookes adorable in his dress too!!!!!!! Also, last night, Mike's parents were on their way to our house to pick up Roman and Mike for the wedding...and on Rt. 8 here by our house, they hit a deer with their car. Mom and Dad were not hurt but their car was. So, I want to ask all of you to please pray for my in-laws as they try to get their car fixed and all the hassells that come with insurance. Thank you God for keeping my in laws safe from injury. Thank you God for blessing Lauren and Joey as they begin their married life together. Thank you God for Sheridan having Roman to play dress up with:) God, please keep blessing our Roman and all kids fighting for their lives. Love and God bless all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 25, 2007 Hello and Merry Christmas to all our family, friends and new friends! I hope all of you had a wonderful time celebrating the past couple of days with family just like we have. The kids got sooooooooo much, they will not want for anything for a very long long time:) Roman and Sheridan got some much needed time with their cousins on both sides of our families. And to the aunts and uncles on both sides, we know how much it meant to all of you to spend time with Roman and Sheridan, and with Mike and I too. We ALL needed time to just be a family and enjoy each other. As you can see from the pics, Roman has a thing for falling asleep under the tree...what is he going to do when we take it down??? And, I have to explain the pics about the air matresses and the card...this might be a long update...here goes...when Mike and I gave Kim and Jeremy our air mattress when we left the BMT unit, I got an idea in my heart that I wanted to help all the BMT families this Christmas. I had no idea how, but I was going to do it. I have come to realize that when you want to do something from the heart, EVERYTHING just falls right into place with it. My mattress idea took off. Debra Nickell and Melissa Melville, both of their boys also have Neuroblastoma like Roman, wanted to help with my idea when I confronted them. We got one of my best friends, Ray Sparks involved all the way from Oregon. I told him I needed help purchasing some air mattresses for the parents on the BMT unit. And, within a couple of days, he sold 6 of them to himself, his friend Craig, his sisters Jan and Gail and to his Dad, Dad Sparks. Debra Nickell's dad, sold the other 8 that we needed. So, a HUGE thank you to all of the above who helped in purchasing our mattresses for those BMT families. Without you, this would not have taken place today. We then thought about blankets for the parents. We were going to buy them, until one day at a clinic appt. with Roman, a "walking angel" nurse, by the name of Kim, wanted to help us out after hearing about what we wanted to do. She made all 14 blankets for our BMT parents. Kim, God bless you for your love and gift of making beautiful blankets. You are an inspiration to all and Cincy Childrens should be very proud they have such a loving and caring nurse working with our sick kids on the fifth floor. I cannot say enough about Kim, a perfect stranger to me one minute, and the next helping me with our christmas idea. Love and gratitude to you Kim!!! Then, we thought about some sort of relaxing pillow. So, we, purchased those ourselves. Then, onto a HUGE thank you to Janine...for donating 28 batteries for the massaging neck pillows, and red ribbon and packing tape. You, are so wonderful donating those items to our cause, we love you. For those of you who do not know who Janine is, she is Lauren, "our angel's" Mom. God bless you Janine and we thank you so much for your help. And, anothe HUGE thank you to Aune Jenn for making such beautiful cards to go along with our mattresses, pillws and blankets. That is one of the pics I have sent to you so you all could see the card she made. We love you Aunt Jenn! So, 2 nights ago, Mike and I packaged all 14 mattresses, blankets, pillows and batteries together and once we got thru the first one, the rest went really fast. They looked awesome!!! And, today, of all days for me to get a doggone migraine...I did. A bad one. So, that is why Mike and his Mom deilvered the mattresses etc. I was down for the count today. I just strted to feel better tonight. So, Dad Sparks, I apologize for not seeing you and the family today. We will see you soon:) Mike and Mom said the families were excited and some of them were waiting for them by the elevators. I also want to send out a HUGE thank you to the fifth floor child life dept. especially Amy. She made our delivering today easy and she was such a big help with getting the parents to come out and get their x-mas gift. Mike and I want to truly thank everyone who had a part in this. The Corey Nickell family supporters and Roman supporters, without all of you buying the mattresses, we would not have been able to make 14 parents sleep better while their sick child goes thru the most horrific and chanllenging time of their lives. We love you all!!! Believe it or not, as sick as I was today, hearing how excited and happy the parents were to get their mattresses etc., I cried. I wish I could have been there, but I was in spirit. I really wanted to help them this x-mas, because of what we went thru seeing Roman like that for a month. Some of those families have been up there for months and months. Also, since Friday, I got some good news and some discouraging news about two of our little cancer warriors...Austin Freeman's biopsy came back clean. His parents were very much relieved. And, we were right slong with them. And, about Jessica Rose, her Mommy Maureen sent an update and said Jessica's MIBG scan still showed 5 places where cancer still is. Jessica last rounds of chemo, since about round 5, has not helped Jessica, her cancer is proving to be resistent. PLEASE pray for Jessica and her Mommy and family. Maureen, we are praying for Jessica and keep on fighting...Jessica is so strong. We will be thinking about her as always. And, we will be enjoying a week here at home. The kids can play with their new toys and we can still try being a somewhat "normal" family. At least until Roman starts radiation on Jan. 2nd. Thanks to all of you for maiking Christmas a happier one for Mike and I for helping with the mattresses. It fulfilled us. It fulfilled our hearts. And that's what Christmas is all about. God, please keep Jessica in your hands. God, thank you for blessing Austin. God, thank you for putting paople in my life like all the people who helped with our cause. God, thank you for our families and family time. We so needed it and enjoyed it.God, please keep blessing our Roman, Corey and Joe. Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 21, 2007 Hello to our family, friends and new friends! Today, we learned that Roman will begin radiation on Wed. Jan. 2nd. We have to be there at 8:30 for them to put all their markings on Roman's belly, sides and back with a marker. As soon as they are done with that, they are going to go ahead and give him his first radiation treatment. He will have 12 treatments total. He will be knocked out for each treatment. The weekends are "free" time for us, because they do not radiate on the weekends, only Monday thru Friday. So, until then, we are going to have a great x-mas with the kids and our families. And, enjoy our time at home being a family. I also want to take this time and send some much deserving "thankyous" to some Roman supporters...Kim Meucci, for wanting to help the fifth floor families out by sponsoring a family this x-mas and getting items off their x-mas wish list. Kim works at a hair salon in Cincinnati, and her co-workers along with clients have made x-mas that much more happier for a family on the fifth floor at Cincy Childrens. We thank you Kim for your willingness to help out a needy family where Roman has spent most of this year at. God bless you! And, to Roman's home nurse Pat...she came by yesterday and brought the kids x-mas presents. She is so good to Roman and Sheridan both. Pat, we thank you from our hearts for doing a great job in taking care of our Roman. You are so sweet!!! God Bless you! And, to my mother-in-law's friend Wilma and her family, for sending Roman and Sheridan x-mas presents in the mail yesterday. You are one of our BIGGEST prayer supporters Wilma, and we truly thank you for ALL of the support and love you send to us. God bless you! And, to Ellen Jacob and family...we are so very blessed by your over whelming love and support, I want to share with all of our supporters what you have done...their family always does a gift exchange, and this year, they have chosen not to get gifts, but to donate that gift money to help Rescue Roman. That is what I call the love of x-mas and what it's all about. Ellen and your family, we are forever blessed by your true act of x-mas love. On that note, I will be sharing more thankyou's in the near future, but can't until after x-mas day to not ruin the surprise for some much needed families at Cincy Childrens. Love, thanks, and God Bless all of you! God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 16, 2007 Hello to our family, friends and new friends! Tonight, our hearts are full of love, support and strength. We were invited to Hebron Baptist Church where Sheridan goes to preschool. The preschool director, Suzanne Byrns, told us that the children's x-mas performance was dedicating their show to Roman and our family. We could not have been more blessed tonight. The kids did such an amazing job, singing, acting, playing musical instruments etc. They ALL were amazing! A job well done!!! It brought tears to my eyes knowing that this was dedicated to Roman. Our family is truly blessed by Hebron Baptist Church. They made us feel so welcomed and such a part of their family tonight. I want to thank personally...Pastor Shawn Edwards, you are such an amazing pastor...you have opened your arms to us, your church, you have come to the hospital to bless Roman and to our home to bless Roman. We are inspired by you. And, Suzanne Byrns, you are such a HUGE Roman supporter... with you and your loving and caring ways, our family is touched by so many new people because of you...we are truly blessed to know that Sheridan is in such a loving preshool environment and that your entire church community is behind us giving us the strength we need with Roman...all because of you and your willingness to help us. We love you and thank you! And, I could not pass up to send you these pics. The best one of course is of Roman falling asleep under our tree. What a beautiful x-mas present he makes!!! Enjoy the pics! God, please keep blessing our Roman. Thank you God for introducing us to a whole new bunch of Roman supporters tonight. When I say we are blessed...I mean we are truly blessed! Thanks to everyone for your love and support! Prayers are what keeps us going! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 14, 2007 Hello to our family, friends and new friends! Today Roman had his GFR on his kidneys. The results we were hoping for did not become our reality. The reality is that our Roman and his little body (mostly his kidneys) took the worst ever beating from the transplant chemo. His GFR result was a 65. That is 2 under the last GFR. We were hoping for Roman's kidneys to bounce back to a 100 or better. The BMT doc told me she thinks that his kidneys still need more time to heal. His labs are looking great but his urine still has a trace of blood in it. Which means, his kidneys are still very much healing. The doc thinks that Roman's kidneys need to catch up with how well his labs are doing. My fear is that they DON"T heal up which means that Roman could not do radiation. As of right now, we are in another waiting period. Until after the new year. Waiting has its perks...we get to stay away from the hospital all together for the next 2 weeks and let our home nurse Pat come see us the week in between x-mas and new year for labs. And, Roman gets to be a very happy, very active, very playful little 2 year old boy. And, Sheridan and our entire family gets to enjoy Roman feeling really good now for the holidays. And, that is PRICELESS!!!!! We just have to keep praying that his kidneys heal in order for him to do radiation. So, all of you Roman supporters out there...please keep the prayers coming. And, speaking of Roman supporters...Mike's employer, Perfetti Van Melle, had a bake sale for Roman and our family this week. We want to personally thank Tracey Morgan for initiating the bake sale and for wanting to help our son Roman. The bake sale was an ENORMOUS success!!! They raised over $900.00 for Roman. Truly amazing...unbelievable!!! Thanks to ALL of Mike's co-workers who supported the bake sale for Roman. Mike is truly honored to be working with such a wonderful, caring group of people. And, we as a family, are blessed by your outpouring of love and support. This has been the most difficult year of our lives. But, knowing Mike gets up every day and goes to work for an employer who truly cares about their employees, means the world to Mike and our family. And, tonight, Mike and I took the kids around in the car to look at all the neighborhood lights. It was one of those "ok, let's eat dinner and just go"...and it's those exact moments with the four of us, that we will ALWAYS and FOREVER take advantage of every time we can. We have to. We have to live in the moment. And see Roman's little face get excited when he sees a Santa in the window or on the lawn and Sheridan just getting excited over everything and telling Roman..."Buddy, look at the moon, do you see it Buddy" ...those moments we will cherish forever. I will update soon again. Please keep all kids fighting for their lives in your prayers. There are so many kids that need prayers. It still hits us to this day that our son Roman, is one of those kids in need of your prayers. God, please keep blessing our Roman. Love and many thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 13, 2007 Hello to our family, friends and new friends! Today, was Sheridan's first ever stage performance...she got to be Mary in their x-mas program at preschool. She looked so doggone cute! ALL the kids looked absolutely adorable. They did such a wonderful job. Mike and I of course were in front row taking video and pics. So, please enjoy the pics of Sheridan wrapped up in a grey "Mary outfit". The pic of Roman in his "Survivor" t-shirt that lookes like a dress on him, looks adorable as well. Roman got a package in the mail today from my best friend Anne's brother Mike and wife Lyndsey and kids. They made Roman the most cutest blanket with airplanes on it and sent him the cancer survivor t shirt, and some magnetic refrig cancer cure words, two books and the most beautiful card. Lyndsey, I know you will be reading this, we thank you from our hearts for doing what you and your family did for Roman. Just amazing the love that comes into our home each and every day with cards, gifts etc. And most of all, prayers. Lyndsey is a cancer survivor herself and she said in the card that she knew the shirt would be too big on Roman, but the word "survivor" on the back was the most imprtant message and she wanted Roman to have that. We truly thank you Lyndsey, Mike and kids for your love, prayers and faith in Roman. Sheridan and Roman also got letters from SANTA today in the mail from the Santa Claus Indiana!!! Thank you little birdie for sending them to our kids. I am pretty sure who sent them:) And, I do have some real sad news tonight to report. One of the little guys up on the fifth floor lost his battle today with lukemia. His name was Rico. He was 3 years old. We met his family up there while Roman was in transplant. Please, say a huge prayer for his family. Specially his Mommy and Daddy. He fought a long hard rough road, and now he is at peace. God bless Rico and his family right now at this most difficult time for them, right before x-mas. And, to let everyone know that Roman has a GFR (kidney function test) at 8:30 in the morning. The whole test takes about 4 hours. We will be at the hospital most of the day with a clinic appt. following after. I will update again tomorrow with GFR results and lab results hopefully. God, please keep blessing our Roman and all kids fighting for their lives. We love and thank all of you for your support! For ALL that you do out in the open and silently do for us in prayer. Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 11, 2007 Hello to our family, friends and new friends! Roman's lab results from Friday were really good. He is doing really well now. Roman's GFR (kidney function test) will be on this Friday at 8:30 in the morning. Followed by a clinic appointment with the BMT doc. Roman's last GFR result was not good at all...it was a 67. We are hopeful that this result will be much better than that. Hopefully higher than a 100. Mom will be going with Roman and I to spend the whole day at the hospital, while Lauren, "our angel" will be here with Sheridan all day. So, that's the scoop. Until then, Sheridan has her x-mas program at school on Thursday afternoon and of course Mike and I will be there together for our daughter, front and center to take video of her first ever stage performance:) I am sure it will be cute as ever!!! Anyway, that's it for now. Be safe doing your x-mas shopping and remember during all the holiday chaos and stress...you are where you are meant to be at that time and place. Embrace each moment, even waiting in long check out lines. God please keep blessing our Roman and ALL kids fighting for their lives. Much love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 9, 2007 Hello to our family, friends and new friends! I have sent all of you 3 pics. One of Roman sleeping on his cup with a side of his face, another of Mike and I all dressed up for his x-mas party at the Radisson and the third one is today, Roman and I snoozing together. I tell you that is the BEST feeling in the world when your own child picks you as their "bed" to sleep on. I love it when Roman does that and so does Mike, of course. The pics of Roman sleeping on his cup is so funny, kids will sleep on anything when they are tired. And, yes...Mike and I do "once" a year get dressed up for his office party. I think we clean up real nice as they say. Anyway, here is the scoop. Roman had a clinic visit on Friday with his BMT doc. They took labs and another urinalysis. As of now, we do not have the results. I hope to have them tomorrow sometime. Hopefully, Roman is holding his own and doing even better than the last test results. The BMT doc wants to see how Fridays labs are before she makes any decision on doing another GFR (kidney function test). She wants that test to be done soon...maybe next week sometime. Here is my hope... since radiation timing is NOT as urgent as once thought, I would love to hold off doing it until after the new year. Here is my main concern...we are not sure really how well Roman is going to handle radiation, meaning is he going to be sick and nauseated, feeling crappy, tired, etc. I would love to have my son and our whole family get to enjoy Roman as he is now...a happy, somewhat healthy little 2 year old boy who wants Santa to come for a visit. Putting him thru radiation around x-mas time, I feel is a bad time to do it. That is a mother's point of view. I want us to be able to enjoy x-mas and family etc. with our Roman now, not a "sick" Roman. I am sure all of you really understand how I feel about this. Since we are not rushed by time, I hope to let the docs know my wish for the holidays. To be honest, that would be the best x-mas gift of all after seeing Roman suffer thru the transplant process and after. He is doing and feeling pretty good right now. He is having fun playing with his Sissy. And, Mike and I and our family, want him to be that very same way for the holidays. I pray the docs will let us hold off. In the meantime, we are being a family and enjoying some much needed family time. Isn't that what the holidays are truly about anyway!!! Please keep the prayers coming as Roman is doing what he does best... so full of life and energy...playing:) God, please keep blessing our Roman! Love to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| December 5, 2007 Hello to our family, friends and new friends! Well, our prayers are being answered with all of your prayers...we got Roman's lab results today. His counts are awesome and his urine is so much better. His bun is 10 and his creatinine is .5 both of which are right where they should be. Roman has no more blood in his urine...hooray:) which is what they needed to go forward with radiation. His white count is 4.6, hemoglobin is 10.2, platelets 131 and his ANC(ability to fight off infection) is 2390. His IGG level, is 1280...which means that on Friday, Roman will NOT have to have an IVIG therapy infusion...hooray!!! He has to be 1000 or better. Roman will only have another urinalysis and possibly more labs drawn on Friday's visit. I am quite sure another GFR(kidney function test) will be scheduled in the very near future so we can move on with Radiation as soon as possible. I will let all of you know when that happens. Right now we are just enjoying being home and enjoying Roman and Sheridan playing together...and of course fighting with each other over the same toy!!! Also, I have arranged to have SANTA come visit us on Wed. evening of next week. Since Roman cannot go to the mall, we will bring SANTA to him and Sheridan. So Sheridan and Roman can sit on his lap and tell him what they want. I will most definitely take pics so all of you can see as well. We are looking forward to the holidays so we can spend some much needed time with our family members who have been on the "outside" because of Roman recovering from transplant. It has been very hard on ALL of our family on both sides. It is all too easy to take for granted our everyday lives and our daily routines. We will NEVER take family for granted ever again. We love all of you and need all of you very much. We are blessed:) By our friends as well. Before I get too "windy" I will say, thanks to all of you for your on going prayers and support. You truly have helped us more than you will ever realize and could ever know. God, please keep blessing our Roman and all kids fighting for their lives! And, God bless all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
|
December 3, 2007 Hello to our family, friends and new friends! Today, our hearts were touched by Brownie Troop #125 here in our neighborhood. Back in October, this group of loving and caring and sweet young girls collected trash for cash and wanted to help our family out because of Roman's cancer. Today, the girls walked here after school along with their troop leaders, to do the most wonderful presentation to Roman and our family. I have it all on video and I took the pic that you are seeing. Sheridan was in the front. Mike and Roman were in back of the girls. And, Tracy and Janell (troop leaders) were in the pic as well. The girls came in and started to read individual well wishes and prayers they wrote themselves for Roman. One by one they read the most sweetest words to Roman. They gave Roman a cute Teddy Bear dressed up in a white coat like a doctor and they gave Sheridan some jewelry for her dress ups. And, Tracy read to us the most beautiful card that all the girls signed. It took EVERYTHING in me not to cry like a baby in front of all the girls. They were just precious! Absolutely adorable! What they did for Roman and our family, will NEVER be forgotten!!! They collected $625.00 for Roman. How amazing are they!!!We of course made them goody bags with Airheads and suckers from Mike's employer, Perfetti Van Melle to take with them. They loved the candy. We thanked them and when the girls were out the door, I hugged Tracy and just balled my eyes out on her shoulder. I told her I tried not to break down in front of the girls. The fact that they did all of this for our Roman, is just priceless. It would not have mattered if they only collected $10.00 for Roman, it is the idea that it came right from kids and their own hearts and hard work. It means more to us because it came from the kids. So, we want to personally thank, Tracy, Janell, Shannon, and the girls...Breanna, Megan, Aubrie, Carissa, Kaitlyn, Melanie, Ariana, Kaleigh, Jessie, Kendra, Erin and Cece. You girls have touched our hearts like no other. We thank all of you for helping Rescue Roman:) And now onto a Roman Update. As you can see from the pic I sent, Roman is feeling fine pushing his dump truck. Roman has labs tomorrow with our home nurse, Pat. She will be here in the morning to draw labs and pick up Roman's urinalysis. Please pray his labs continue to improve as they have been. We love all of you and thank you for your love and prayers. It's people like TROOP #125 that keeps us going. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 30, 2007 Hello to our family, friends and new friends! I am going to start off by letting you know I am more emotional than I have been...probably since April 25th and that very first month. Today, was a day of many questions that have been answered. Today was a day that Mike and I were reminded, as if we could never forget....at just how serious and how life threatening Roman's cancer is. Today, we talked alot about the what if's and how we would handle situations that could arise from radiation and the oral chemo. It is very hard to have a discussion about the what if's with Roman being so much full of energy and so alive and even with his TMA, his kidneys are healing. The BMT doc told us today that TMA is a very serious condition and kids do die from it. That was just plain scary to hear those words. Roman has this, but thank God his TMA is improving. I also wanted to let you know that our decision did not come easy. Roman's doctor, and I NEVER mention names, but in this case, I will...Roman's oncologist, Dr. Lars Wagner, is just the most amazing doctor and Mike and I are truly confident with his recommendation to move forward with radiation. The catch is however, that Roman's TMA, is still not 100% gone and therefore, he cannot start radiation yet. They are going to monitor him with labs and urinalysis for the next couple of weeks. Then, we will do a GFR, kidney funtion test, to see where Roman's kidneys are. That number result, which Doc Wagner feels will be higher than a 67, along with the lab results showing NO blood in his urine, they will proceed with radiation. Roman's recent labs showed a small amount of blood as compared to a large amount a couple weeks ago. Which is much better but not good enough for radiation yet. However, today, Roman is 44 days post transplant, and they usually do radiation from day 23 to 46. So, that being said,the doc said we have a bit of wiggle room to do radiation. Sooner the better. It all depends on Roman's body and kidneys. We know that NOT doing radiation, would put Roman at a greater risk for relapse to the original tumor site. So, of course knowing that, Mike and I were confident with our decision. And, the right kidney, will probably take a hit directly, but, Dr. Wagner told us the other kidney would help compensate for any damage done. He told us there were kids who lost their kidney during surgery because of where their tumors were originally and that Roman could tolerate radiation with two functioning kidneys than they did with one and they managed to go thru radiation. So, that helped me with my decision as well. It was alot of info and alot to take in and think about. There are NO gaurantees either way so, we have to give Roman the greatest chance for survival and that means radiation. We have no gaurantees that Roman's TMA will be gone for good either...so with the oral chemo, Roman will be monitored VERY closely while on it. And, Dr. Wagner assured us that with the first sign of trauma or trouble with the kidneys, he will pull Roman off the oral chemo and end his treatment at that point. See, we had to do radiation for fear that he would not tolerate oral chemo well because of his kidneys and the TMA. At least with radiation, we know we gave him one of the 2 possible tools left in this protocol to fight this horrific nightmare just in case he does not tolerate the oral chemo. It just really hit me hard today thinking about the what if's about his treatment plan. I am scared to death. Speaking about death, I cannot even imagine how sometimes Mike and I have the conversations we do about death and as hard as the conversations are...we are forced to have them because there is no cure for what Roman has. It pains me and numbs me to even think about Roman being gone from us, that's why I am so emotional today. I want so badly for all this to be just done with and over with. And, yet, we have such a very long long road ahead of us still. The road is so long that there is no end to our always praying that this horrific cancer never comes back to our Roman. I just simply cannot imagine life without our Roman. And, right now, we are just savoring every moment with him and Sheridan...for we do not know what the future holds. We do know that we will do WHATEVER we can do in our power humanly possible to make Roman better. And, what you can do is continue to pray for Roman, us and his doctor, and that time will be on our side with his kidneys healing sooner than later. Thanks for letting me speak so openly and freely about some not so pleasant information...but that's our reality everyday that we face as Roman's Mommy and Daddy. God, please keep blessing our Roman! Love and thanks to all of you for your support. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 29, 2007 Hello to our family, friends and new friends! Today was a good day at home. We got the results back from Roman's labs. His counts are really great and looking good. His urine test has improved and everything is normal. We are still waiting on one lab result...the IGG (immunity level) to see if Roman needs another IVIG booster infusion or not. We have a 10:00 appt. tomorrow in the day hospital in case he does need it. The real reason we are going to the hospital tomorrow is to meet with Roman's oncologist and the BMT doc to discuss radiation. The questions will be laid out to Roman's oncologist and we pray he will give the info we need as Roman's parents to make the right decision about to go ahead with radiation or not. I am not sold on the idea one bit. Mike has not totally put the idea out of his head. So, please PRAY that Roman's doc will give us the info we need to make a right choice and PRAY for Roman's doc that he truly examines Roman as an idividual person and not throw him in with the other kids with this disease. Yes, Roman is not alone in his fight, but they all are so very different with different stories and challenges, etc. We are scared and nervous about the future of Roman's treatment. So, please, pray for the right decison to be made. I also wanted to remind all of you that the hospital is in need of platelets. Some kids are having to wait on them because of no matches for them. Life is in the hanging so to speak. There are many many kids who depend on them daily up there. Roman was one of them. Please, if you have time, make time to donate...even blood. You will save a life...a child's life:) And, I need some prayers tonight for a little guy named Austin Freeman. He had his BMT a year and half ago, and he just had his scans done for a follow up and his jaw was lighting up on his MIBG. His family is very worried and Austin may need to have 2 to 3 jaw surgeries and even possibly more chemo/drugs to help him get rid of this in his jaw. Please, pray for the Freeman family as they take more tests next week. And, finally, I wanted to share with you some pics: Roman in Sheridan's Dorothy wig...My sisters and me going shopping the day after thanksgiving...Mike and the kids taken today in our foyer...just a pic of Roman on the couch...Sheridan in her Indian costume she made at school for thanksgiving...Sheridan and Roman playing in the garland....Sheridan and Roman faking to be sleeping by the tree...and our fireplace at X-mas time. I hope you enjoy!!! We love all of you and thanks for the prayers...keep them coming...we need them now more than ever with a HUGE decision to be made tomorrow. God, please keep blessing our Roman! Love and thanks to all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 28, 2007 Hello to our family, friends and new friends! Today, Roman and I went to the clinic for a noon time appt. and Mom came to take care of Sheridan getting her to and from school. Roman had labs drawn and a urinalysis done. His counts on his CBC came back looking pretty good. His white was 4.1, his hemoglobin was at 10.6, his platelets were 129 and his ANC(ability to fight off infection) was 2090. We are still waiting on results from the urinalysis and the IGG level( immunity level) and a couple of other numbers the docs are looking at for hopefully NOT another Rituximab infusion therapy. So, we should hear some more results tomorrow. The docs want to meet with Mike and I soon about Roman having radiation. We are not at all comfortable with Roman's right kidney taking a 40% direct hit thru 12 rounds of radiation. We would rather him just move right on to the oral chemo. Which in itself has side effects directly related to the kidneys. So, we are not looking forward to that either. But, to avoid radiation, we will gladly do the oral chemo for the maintenance portion of the protocol Roman is following. We are scared. We are worried more all the time that if we make the wrong decision, what will the outcome be. The decisions we have to make are by far not the normal decisions most normal parents make. We have ALOT to take into consideration. With Roman's quality of life, Sheridan and our family life. Mike and I will NOT allow ANYTHING be done that we are not 100% on board with. That being said, we do not wish to do radiation. We have no idea what ramifications will come of Roman's kidney and in general what other side effects down the road will decide to show up. That is the horrible story with Neuroblastoma...there are NO guarantees with any decision that is made. So, when we meet with the docs and convey to them our concerns, I am sure they will understand our concerns as well. It is almost like asking...do the risks out weigh the benefits...well, Mike and I think not. The risks are too many and scary and unknown. The fact remains that we do know his kidney will get hit hard. Even when already being week with the TMA he has. Anyway, please pray that his remaining labs are good and that Roman will prevail and stay the course as he has been doing all along. He has proven strength from far beyond that no one can possibly comprehend in a 2 year old. We are so very proud and honored to be his Mommy and Daddy. I will update more tomorrow. God, please keep blessing our Roman. Love and thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 26, 2007 Hello to our family, friends and new friends! Today, was another great day at home. It almost has felt like pre April 25th...when Sheridan and Roman just played during the day and the only thing we had to worry about was what was for dinner!!! Boy oh boy how our lives have changed completely since then. Roman has been playing, eating, drinking, running, pushing his dumptruck all over, and playing with playdoh all the time. Oh, and eating Fun Dip and suckers!!! He and his Sissy, have loved looking at all the ornaments on our tree and touching them and getting excited seeing them. It's so cute watching them with the tree:) We put our tree up this past Saturday after Thanksgiving. Now, we just have to do some stuff outside. Well, let me re-phrase that...MIKE has to do some stuff outside with decorations. He He!!! Anyway, tomorrow, Roman has a clinic appt. at noon. They will draw labs and do a urinalysis to see where we are as to continue with the Rituximab therapy and with the IVIG immunity therapy. Pray that Roman needs neither of them. Hopefully, his counts will be good and the infusion therapies will stop. Mike and I do not like what they do to Roman. Leg and joint pain, diarrhea, headaches, just not our Roman at all. I will update tomorrow if I get any results back. And, I ask you to please keep praying for all kids fighting for their lives on the fifth floor and beyond. It is sad to say, but I know so many kids that are sick, it breaks my heart to even let all of you know that there are THAT many sick kids. God, please keep blessing our Roman! We love and thank all of you for your continued support and prayers. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 25, 2007 Hello to our family, friends and new friends! It has been a remarkable time at home for the Thanksgiving holiday. I recently told someone..."even if we ate hot dogs and mac n cheese, as long as we are together, all 4 of us under one roof, food does not matter". But, we did enjoy good food and Derney and Duppy and Uncle Steve with us on Thanksgiving day. We, indeed have alot to be thankful for. And, YES, on Friday, "Black Friday", I enjoyed some much needed sister bonding with both of my sisters. It felt good to be with them both and spend time with them. Thanks to both of my sisters for showing me a great time and I love you both so much. We started out at 4:00 or so in the am and ended at 6:00pm or around there. We had a blast! And, then on Saturday, Lauren, "Our Angel" had her bridal shower held at her aunt's house. So, Mom and I went to that together and Lauren's family is so amazing. Everyone so concerned with Roman and Sheridan and how we were all doing. Lauren, we love you and are so excited for you!!! Sheridan is in the wedding on December 28th. She will be of course the flower girl. And, then today, I had a bit of a headache. We all just kind of layed around and did nothing all day. It felt so good to do that. Right now, Sheridan is in the bath and Daddy is keeping Roman occupied with toys...if he heard her in the bath, he would want to take one and wrapping him up in press n seal wrap to just take a bath in 1 inch water is just a...well....lets just say that Mike and I cannot wait til that central line comes out so Roman can be a normal little boy playing around in the tub with his toys. We long for that day to come. We have another great day at home tomorrow, then I take Roman to the day hospital on Tuesday. I am sure they will do labs and not sure about anything else right now. So, I will of course keep you posted on Roman and the radiation being on hold until the TMA clears up with his kidneys. Until then, keep praying for all of Roman's friends and families at the hospital and beyond. God, please keep blessing our Roman. Thanks and Love! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 21, 2007 Hello to our family, friends and new friends! Roman and I had another long day spent at the hospital. From 8:00 til around 4:00. He did get some much needed blood and we did get a urinalysis on him. No results back yet on either. The reason for the lengthy stay, is after Roman got his blood, his blood pressure shot up to 148/82. So, we had to do some lasix because the doc was thinking about all the volume Roman got with the transfusion. So, we did a round of lasix to help Roman along with the volume he recieved. He did get quite alot of blood. Anyway, we then finally got to go home. Mom came real early yesterday to stay with Sheridan and get her ready for school and take her and pick her up. We hope that we find out that Roman's blood in his urine has gone down or away completely, we hope that his numbers for this TMA condition have also gone down. We are set to be home today, tomorrow and a possible visit on Friday for anther Rituximab infusion. We hope not, but it could be the case from the results we learn. I have posted a thanksgiving check list on Roman's website. Please, read it and be reminded how lucky and blessed your lives are and everything and everyone in your lives as well. Until possilbly the weekend before I update again...Happy Thanksgiving to ALL of you! Mike and I have so much to be thankful for. Including all of our family, friends and Roman supporters ...I have said it before and I will say it again...due to you, we are making it thru and we thank you for letting us fill your lives with Roman and our family:) God, please keep blessing Roman, Sheridan, our family, friends, supporters and ALL kids fighting for their lives. Love and many many thanks to all of you this THANKSGIVING!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 19, 2007 Hello to our family, friends and new friends! Today, was a bit of a huge milestone in the right direction for "normalcy" in our family. Mike went back to work today. And, I got to be a Mommy to both of my kids at one time all by myself, just like it was before all this began and right before Roman's stem cell rescue. It felt really good to be here with both of my kids and make them breakfast, lunch, snacks, drinks etc. watch them play with each other and push their dump trucks and play dress up. It was a beautiful day here:) Roman's nurse came to do lab draws and a blood pressure check. His lab results were pretty good. He is making his own platelets...HOORAY:) They were 77. His hemoglobin is low at 7.1...so, tomorrow we will be getting some blood along with a doc visit at the day hospital at 8:30. Getting blood is a 4 to 5 hour ordeal. And, they want a CBC and a urinalysis as well. No IVIG tomorrow because of getting blood. Hopefully, he will not need the immunity booster (IVIG) anymore. So, Roman, for most of the day, was a typical little guy playing all day here with his Sissy. You could not tell his hemoglobin was that low with him running around all day long. If that were you or I, we could barely move with low numbers like that. Anyhow, if felt good today to be back in somewhat of a routine. I miss our routine and so do the kids. I long for the day when ALL of this nightmare will be over and life moves forward as it does all the time. Until then, a day at a time is how we have made it this far and a day at a time is how we will keep on going. Love and thanks for your prayers and support. It gives us the strength to stay the course. God, please keep blessing our Roman and Sheridan... and God, please keep praying for Corey Nickell, Joe Melville, Austin Freeman,Jessica Rose, Bradley Jude, Jeremy Smith, Little Rico, Maddie, Nathan, Eli, Justin, and Conner...and everyone fighting for their kids lives on the fifth floor at Cincy Childrens or across the country:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 16, 2007 Hello to our family, friends and new friends! Well, if there was a record for the longest stay at a hospital just short of sleeping there, the Fariellos would own it. We left the house yesterday at 8:00am and did not get home until 9:00pm. It was the longest day ever. Roman had his GFR done yesterday as well as another Rituximab infusion therapy, and many many blood draws. I am surprised he has anything left in his little body. As you may recall, Roman's GFR results have ALWAYS been really well. Even on September 21 when he did all of his pre BMT testing, his GFR was a 188. Which is above excellent for kidney filtration. Well, I am sad to report that both of Roman's kidneys took a bad "beating" from that horrific chemo they used for his stem cell rescue. The chemo they use for their neuroblastoma kids is extremely harsh. Harsher than most of the chemo used on the fifth floor there. Roman's GFR as of yesterday was a mere 67. I know alot of you are asking, what does that mean for Roman. Well, it is not kidney failure. Those numbers would have to be in the 30's to 40's range for that to occur the docs assured us of that. Roman continues to make pee. Which is a good sign. He has a large amount of blood in his urine from all the urinalysis they have done on him. It fluctuates back and forth from large to moderate. Another point in Roman's favor is his BUN level...it was the other day at 30, then it went to 18, now it is 11. So, he is on the downswing we hope. Roman's platelets have recovered on their own as well the passsed 2 days. From a 24 to 39 yesterday.. Which means he is hopefully starting to make his own platelets. With everything that has been going on with Roman's kidneys, Roman's Oncologist and his BMT doc both want to hold off on doing any radiation right now. It is best to wait and see if the kidneys will heal and reverse back to normal or as normal as we can get. They also informed us that during radiation, and where Roman's original tumor was along with an affected lymph node, the radiologist wants to hit the surrounding remaining lymph nodes which means the right kidney, will take a 40% hit directly since there is no other way around it other than to just involve the kidney. With all that being said, Mike and I feel confident that Roman will heal on his own and during his own time frame. They will not go forward with any radiation as long as there is a kidney issue for Roman. So, the plan for now is wait, wait and wait. In a week or 2 weeks, they want to see how the kidney is doing again. Probably with another GFR. If we are still where we are today...the docs said they will customize Roman's care and discuss future treatment then. So, on that note, we are of course very discouraged by this news. Our son has taken 6 rounds of chemo previously and threw them around like rag dolls. Only to be informed that our perfectly "healthy and cancer free" child before the rescue, now faces moderate damage to his kidneys after just one horrific round of nasty, evil chemo. We do not know what he future holds for Roman and his kidneys, or radiation for that matter. All we do know is that Roman, since April 25th, has always and continues to be our fighter. He is strong. We know our son is strong. And,we feel he is going to pull thru this as well. I want to thank "our angel" Lauren, for staying with Sheridan ALL DAY yesterday. I know it was a long day for Sheridan as well...as soon as we got home last night..."Mommy, could you pick me up and hold me" and I of course immediately put my arms around her and teared up too. Lauren, you are our life saver, and our blessing. Sheridan adores you and we are so lucky to have you in our family. Again, what are we going to do without you when you leave us in March!!! Anyway, we are going to try to have a "normal" weekend here with the kids. Roman is not due back until Tuesday for another IVIG immunity boost infusion. So, we need some prayers...prayers that Roman's kidneys recover and heal, prayers that the docs make the right choices for Roman's future care, prayers that we make the right choices for Roman's future care, prayers that if radiation is out of the question, that Roman's cancer just stays the heck away from us all together. God, PLEASE, keep blessing our Roman now more than ever. Thanks and keep on praying! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 15, 2007 Hello to our family, friends and new friends! Today was a pretty good day at home. "Our Angel", Lauren, came over to see the kids and play with them. She missed seeing Roman while he was in transplant. The kids adore her. Roman missed her playing with him. Poor Lauren, I am sure she misses those days of living with us and the kids driving her so crazy...she has to come back for more:) Lauren, I am so glad you came over today and we got to spend some time together. You are and always will be a blessing to Mike and I and our kids. They love you and so do we. We will see you bright and early tomorrow. Lauren will be here with Sheridan ALL day while Mike and I take Roman for his GFR (kidney function test) and his doc visit and his Rituximab infusion therapy. So, that literally means ALL day at the hospital for us. The GFR will be a bit different this time because with Roman's TMA condition, the doc wants to see how each kidney is filtering. They do this with a picture of some sort. I am not sure using what type of pic or equipment. I guess we will find out. Roman's labs yesterday were a bit scary because his platelets were down to 24 from 183 from the other day. It's the TMA that drains his platelets. Mike and I have been worried that he would have a severe bloody nose or something else wrong the past 2 days. The doc did not want to bring him in for platelets until tomorrow because he needs to start making them on his own. Very scary but, he did just fine. Hopefully, the platelets recover on their own like they are suppose to. Roman is playing with his Sissy all the time. And, she is just on cloud nine having him home again. They have been playing real well together. I will post some more pics tomorrow maybe with the update about the results from the GFR. Those usually come back rather quickly. Please say some prayers for a little guy named Bradly Jude. He is on a venthilator now and has fluid around his heart. He is from Lexington Ky and they just left from up here last week around the same time we left. He is 3 and has stage 4 neuroblastoma just like Roman. We are with them in our hearts and spirit. And, please pray for little Corey Nickell...he is on the fifth floor participating in a study and he is experiencing some nasty side effects from the study. So, please pray they get to go home this weekend and he recovers quickly. Until tomorrow...God please keep blessing our Roman and ALL kids fighting for their lives with cancer. Love and Thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 14, 2007 Hello to our family, friends and new friends! I was way too tired last night to update about our day yesterday...here it is...Roman had his CAT scan for radiation. They also put 4 big "X" marks on his belly, one at the top, the bottom, and on each side. Roman was not liking waking up after being knocked out for such a short time. When he usually gets knocked out, it is for at least 45 minutes to an hour or longer that his body is used to. Radiation will literally, be one minute or less and the time it takes to wake him back up. So, hopefully, when radiation starts, his body will get used to waking up more quickly. We got our appointment schedule for radiation. And, would'nt you know that they want Roman to be in 2 places at one time...imagine that!!! They have him on Mondays at 8:45. Then on Tuesday thru Friday, he is scheduled at 11:45. He is also scheduled for day hospital for infusion therapy on a couple of those days at 10:00 at Childrens. Boy oh boy, did I let them know my aggrevation with that time. He is 2 years old, they want him to eat to get his strength back, yet, they schedule him at almost noon!!! That makes absolutely NO sense to Mike and I. Roman will have to be NPO or no food or drink after midnight on all those nights for his radiation. Are they out of their minds thinking that his parents are going to stand for those times!!! NOT!!!! He needs to eat!!! And drink!!! It is just that simple. So, I called as soon as we got home yesterday to let them know he cannot be 2 places at one time. She said she would call me back from the Barrett Center, but, guess what...still no phone call. So, I really cannot tell you what times Roman's radiation will take place. I can tell you that the radiology onclogy doc wants to begin this coming Monday. That's all we know right now. Today is a new day and maybe we will learn of better appointment times for Roman. We better!!! Roman had a bettter day yesterday after actually waking up from being knocked out. He ate a bit more and drank some, but, at our request, he is on fluids at night to help keep him hydrated and kidneys flushed. His labs from yesterday were a bit better. One of the areas of concern is called the BUN level. Roman's from the other day was at a 30. It came down to 18 yesterday. Ideal level would be 10 and under. So, hopefully, all of Roman's areas of concern will start to come down as well. I cannot believe that Thanksgiving is next week. The time has gone by fast. Which is good for us. This year has been the worst year ever. If I had to pick out things to be grateful for this year, it would have to be that God has shown us that out of this horrible time for our family and Roman, out comes overwhelming love, support, and prayers from family, friends, and even new friends and perfect strangers... And, also, that a parents love for their children is something that cannot measured. When Sheridan and Roman were born, we felt all those warm feelings of love that parents feel. And we still do, however, our love has taken on a whole new meaning now in a very different way now. Our love for them is timeless, endless and goes far beyond what other "normal" parents feel about their kids. For that experience, we are thankful, because parents don't usually get to experience what we have. Our love for Sheridan and Roman is like no other. Mike and I are blessed to have Sheridan and Roman in our lives. And, for that, we are truly, truly grateful:) God bless all of you! And, God, this time, please keep blessing our Roman and Sheridan as you have:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 13, 2007 Hello to our family, friends and new friends! Today, we got to stay at home with a much needed break from going anywhere. Mike got to take Sheridan to school and pick her up too. She loved having her Daddy do it. She wanted him to see her friends Macy, Chloe and Ava. She was so excited about her Daddy seeing her friends and hanging up her coat and school bag. It was great to her happy:) Roman, on the other hand, has had an ok day. He is having ALOT of muscle pain and joint pain from the IVIG (immunity injection) he had yesterday. He is also having some flushing on his head and his face. With the muscle and joint pain, he is having trouble walking and moving around. He is also nauseated. With the help of tylenol and zofran (anti-nausea) he makes it thru the pain and the nausea. Roman has also been having some mood swings as well. All of these are side effects of one or more of the medicines he is on. The mood swings are rough to see because Mike and I know... that is not our Roman at all. He has never acted like that before all of these drugs were put in him. We do not like it, but, we do not have a choice either. Tomorrow Roman has to be at the Barrett Center for a CAT scan and to get his markings drawn on his belly so they know exactly where to radiate. We have to be there by 7:30. So, we will leave here at 6:30. Mom is spending the night tonight to be here with Sheridan when she wakes up. Our home nurse will meet us there to draw labs because the docs want them taken in the morning. So, I am not sure how long we will be there, hopefully not too long. And, hopefully things go smoothly for us. Depending on his lab results, Mike and I might have to take Roman back up to the hospital to get some platelets. He will probably need them by tomorrow. Due to the TMA, this is the pattern he has been following to get platelets. About every other day or so. Please pray Roman's scan goes well and we find out when radiation will actually start. Until tomorrow, thanks for all of your love, support and prayers. It truly keeps us going. God, please keep blessing our Roman:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 12, 2007 Hello to our family, friends and new friends! Well, I know that hundreds of you who follow Roman, maybe even thousands, have been waiting to hear about our day yesterday. It started out a bad morning because Roman puked in his bed at 4:00am and Mike and I did not get to bed until late anyway, and we had to have Roman at the hospital by 8:00am. That meant leaving by 7:00 and being up at 5:30. Our day lasted so so long. We did not get home until 6:00pm. Mom came to be with Sheridan all day. I remember growing up and into my late teens and real early twenties, when my Mom (rest her soul) used to tell me when things were real bad for us, she would say "this too shall pass"...well, Mom, I know you can hear me, please make it pass, please make it done and over with!!! Mike and I just want it all to stop. We heard some discouraging news about our Roman yesterday. He is experiencing a rare side effect from the horrible chemo he got with transplant. It makes his blood pressure high, it makes him need platelets every other day (not normal at this time this far after transplant), and makes some of his blood lab results come back with some high numbers. That being said, it was enough to alarm the doc to start treatment to try to correct the side effect. The condition is called TMA. Thrombotic Microangiopathy. It scares Mike and I that Roman has this condition as a result of the chemo. His kidneys were just fine thru everything else. Now, we have this to worry about on top of everything else. The nasty drug that scared me so from the other day, well, turns out to be the drug that can help Roman's conditon. It sure would have been nice to know that the docs were even concerned with his counts etc. No one bothered to tell Mike and I. Here we are thinking Roman is doing great, only to be blindsided by this. I do not like to be blindsided with anything, I like to know and be informed of everything. I let the doc also know how displeased I was to hear that the drug in question is not even tested on kids and not aprroved for kids by the FDA. It was assurred by the docs that it is safe and they use it all the time on kids up there. I immediatley thought, I don't care right now about other kids, I care about Roman!!! The doc assured us and said "we are not against a wall here, let's get this in him to try to prevent it from getting worse." So, it is uneasy to know that this drug is being used to "help" Roman's condition improve but Mike and I are convinced that it has given Roman some unwanted side effects. I guess we are forced to take the good with the bad. Even if the good isn't really good. So, after the day we had, after hearing about Roman's new diagnosis, after being at the daggone hospital all day with worry and stress...it finally started to hit me. Mike and his Mom and I were talking about the upcoming radiation. Uneasey again for fear of damage to the kidneys. We were discussing Mike possibly going back to work, and how we would manage everything that still lies ahead for us. The road is still very long. While other families are worrying themselves with hoilday turkeys, get togethers, kids sports activities, house work, grocery, just everyday living... Mike and I are trying to maintain stability in a 4 year old's home life, fight along with our son battling thru cancer, Mike possibly going back to work, keeping a job and our ins., juggling back and forth at the hospital, taking Sheridan to and from school, etc. And, I know Mike is ready to go back to work, and I know his company has been just a blessing to us, his co workers who donated their time etc, but I honestly can say I don't know how we are going to do it all. I am scared. I can't be 2 places at one time. One child is going to suffer physically and one child will suffer emotionally at the hands of this damn cancer. I know Sheridan and Roman have their grandma(Derney), but that's not the same thing as their Mommy taking care of them. It's damn near close, but still not the same. I love my Mother in law to pieces, and I know she is ALWAYS there for us anyplace and anytime, but that still does not make the road ahead easier for me, as their Mommy. I suffer and struggle with that all the time. When Mike does possibly go back to work, it is going to make things even harder because inevitably, I will be with Roman all day long, and Sheridan will be with Derney. Not seeing her Mommy and her Daddy all day long is going to be very hard on her. And I truly don't want her to suffer and start acting out and lashing out or withdrawing. I finally reached a breaking point last night with my mother in law here. Both Mom and Mike said Sheridan will be ok, " it's just for 2 weeks". Well, 2 weeks is a very long time with her little life. She just went thru a month with all of us not being here together. It is different with Mike because he does work all day long while I am here with our kids usually, so I am coming at things with a different view. Well, I did not want to hear that and so I took off upstairs, closed the door and threw myself on the bed to just have a good cry. Cried about everything. I realized that thru the transplant process, I was pretty good with only one big cry. So, I needed to cry and just let it all out. I called my best friend Anne and she cried along with me. Thank you Anne for ALWAYS being there for me. You are the one person outside of Mike who I can truly just let down with. I love you and thank God everyday I have you as a life long friend in my heart. You said to me"let me pick up the pieces". Well, my friend, you have done way more than pick up the pieces for me and my family! I cherish you. Then, I also spoke to Debra, Corey Nickell's mommy. She called me and needed me so we cried some more together. Debra, you will make the right choice for your son. You are strong and only you know what is best for Corey. I am so glad we talked and got to vent. Debra, you are a blessing in my life, you and Melissa both because we have sons who are battling the same horrific disease. We have each other and NO ONE knows the pain we go thru as Mothers of kids with this disease. I love you both and Debra, be strong, stand your ground and don't look back. If it's meant to be it will happen. On that note, I want to end with there are many many families that need help up there on that fifth floor for the hoildays. When I send my updates to all of you who read them and think we have it bad, think again, there's always some other family going thru it way worse than we are, if that can be possible. If you can donate blood or better yet platelets, please do so this hoilday season. You will be saving a life...it might even be Roman's:) Thanks for letting me vent and let out some frustration. God, please keep blessing our Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 11, 2007 Hello to our family, friends and new friends! It has been a great day here with our family, just the 4 of us. We actually got to eat breakfast and dinner together at our table. It felt more than great. Oustside of Roman feeling some yucky side effects of some of the meds he is on, with giving him some anti nausea meds and tylenol for his leg pain and joint pain he is feeling, he is doing just fine. As you can see from the pics I sent to you, he took a much needed nap today on the couch and ate some skyline chili (yesterday's pic) and ate a white powder donut. There is nothing wrong with Roman's eating habits. Thank God!!! He is eating about just as much as he did before. He is just wanting to taste everything. As if he forgot what food tastes like. He even said "yummy" out loud a few times tonight with dinner and his donut. The other pic I sent to you is of Roman's banner Anne and her girls made for Roman's homecoming. It is so cute, I am not taking it down until I am forced to with the weather outside. Love you Anne! So, tomorrow morning, bright and early, Mom is coming to sit with Sheridan so Mike and I can take Roman for his IVIG infusion at the day hospital by 8:30am. This is an immunity booster for him. The infusion lasts about 4 hours. And, I am sure they will draw labs and we will see a doc tomorrow. Mike and I are so unhappy with some of the drugs he is taking. We are going to question their use in our son. I did alot of research today on the internet and found disturbing facts about 2 of the drugs. I will let all of you know what happens in tomorrow's update. This Wed morning at 7:00am Roman has to report to the Barrett Center at UC Hospital for a CAT scan to get his markings for radiation. Radiation will be done at the Barrett Center. Radiation is not done at Cincy Childrens. I will talk more about that when it happens. Roman gets 12 rounds of radiation to his belly where the original tumor was. We are not sure when radiation will start. We are thinking maybe next Monday??? Not sure. We will find out more this week. So, on that note, enjoy the Roman being home pics and I will update tomorrow. God, please give Mike and I the strength to stay the course...we have such a long way to go still. God, please keep blessing our Roman. And, God, please give the docs a warning for tomorrow because Mike and I want some answers about these drugs. Thanks to all of you for your prayers. Our hearts have been full since April 25th. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 10, 2007 Hello to our family, friends and new friends! Today, started out as a good morning here...then, we gave Roman his Norvasc (blood pressure med) and it hit him like a ton of bricks. He just felt bla and looked miserable the rest of the morning into the afternoon. Roman's nurse came today to draw labs and check his BP. The hospital called us this afternoon with Roman's lab results. Everything was fine...except he needed platelets. So, you know what that meant...YES, back to the hospital AGAIN!!! I told Mike today, just for one day can we just have one day of rest and recovery at home without any problems!!! I told God today as well ...ENOUGH... PLEASE!!!!!!!! Thank goodness Mom and Dad were on their way to our house anyway, so, they stayed with Sheridan. She was so upset when I told her that we had to take Buddy back to the hospital for some platelets in his line...and she immediately asked me to pick her up and hold her. I did my best to reassure her that we would not be long and that we would be back. I am quite certain what went thru her mind when we left. We left at 4:15 or so. While in the car, Roman started to feel a bit better. Although we did pre-med him with tylenol and benedryl for the platelets. So, maybe that helped him with the nausea from the norvasc. Our hospital visit went rather smoothly. Thank goodness!!! And, Roman's BP readings were great as well. I still feel that Roman does not have an issue with his BP, he has hospital and nurse and doctor issues with them coming at him all the time trying to get his BP. He's tired of them touching him. And, I don't blame him one bit. So, tonight putting Roman down for bed, was a bit painful. He is so used to having Mike or I sleep right next to him, he is having some separation anxiety. But, eventually, like maybe 10 to 15 minutes, he went to sleep. Last night Roman slept on the couch and Mike right beside him on the floor. Poor Daddy!!! And, poor Mommy...I thought I was going to get to sleep next to my husband last night...we have been like ships passing in the night for a month now. Oh well, the kids are much more important than our sleep right now. I told Mike we have not slept right since April 25th...and we NEVER will like we used to before April 25th. Other than the platelets and the horrible side effects from a couple of the drugs Roman's taking, it was an ok day. And, yes, it still feels awesome to be home all 4 of us and under one roof together. I pray that tomorrow we can stay at home and remain at home. And do nothing ALL day except be together. On that note, I am going to try to enjoy some quiet time with my husband and maybe watch TV or something "normal" like that. Thanks to all of you for loving us and inviting our words from our hearts into yours. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 9, 2007 Hello to our family, friends and new friends! HOW SWEET IT IS!!!!!!!!!!!!!!!!!!!!!!!!!!! All 4 of us under one roof again! Roman came home tonight around 7:00pm. When we arrived in the driveway, we noticed a big Welcome Home Roman sign with alot of balloons across the railing on our porch. Mike and I just cried. Mom had told us that my best friend and benefit planner, Anne, and of course her girls made it for Roman. Anne, we love you and thank you for warming our hearts!!! Dad (my father in law) let me apologize right now because this update is going to be "windy"!!! Let me start off by telling you how emotional Mike and are about this homecoming. Sheridan ran out of the door and INSTANTLY grabbed to hug and kiss her "Buddy"...talk about balling my eyes out! I video recorded the whole thing of course. When Roman and Sheridan finally were in the door with Mom, Mike and I went outside to get everything out of the car...and on our way out, standing in our walkway, we just broke down, held each other and sobbed. If people were outside listening, they would have heard me actually gasping for a breath of relief!!! Mike and I needed that moment to just have with one another. Again, very emotional. Mom made a yummy pasta and sauce dinner for us with bread. Mom, I am so blessed and the luckiest daughter in law in the world to have a Mother in law like you:) We could not, would not have made it thru this entire journey if it were'nt for you. And, my father in law, taking off a whole month to help out with just everything, well Dad, again, I am very blessed to be in the Fariello family. I have the best in laws in the world. I love you. We love you. Thank you for just putting everything and everyone else on hold to take care of us, Roman and Sheridan. The pics are fresh off the camera tonight. I wanted all of you to see how happy Roman is to be home. And, to see his new big boy bedroom. Sis Thomas, YOU are an angel for sewing Roman's curtains, bed skirt and duvet cover for his bed. It looks absolutely amazing and he will be so happy in his new room because of your fancy sewing. We love you Sis Thomas, and thanks for touching our lives and making Roman's homecoming complete for him. Now that I have said all my thank yous for the day...onto Roman. The day could not have taken longer and Mike and I were getting very upset with the staff at the hospital. They, reluctantly let us go home tonight. I, of course, "won" the battle. We are home aren't we!!! They were not pleased with Roman's blood pressures. But, in our defense, we let them know that Roman has so much SODIUM in his tiny body, that when we kissed his head, we tasted salt!!! That's how much sodium he has in his body...that's why his blood pressures are still high. Roman has a ton of meds to take. Including a blood pressure med and a diuretic med. The home nurse is coming both tomorrow and Sunday to draw labs and check blood pressure. I argued that no matter how many meds they gave Roman, no matter how many nights we stayed at the hospital because of high blood pressure, they were not going to get an accurate reading anyway because our ROMAN, has had ENOUGH!!! So, on that note, they released us. We do have to go back on Monday morning for an immunity booster infusion that lasts 4 hours and then to a "checkup" with the doc about blood pressures. So, Roman hopefully will NOT need blood or platelets this weekend so we can enjoy our much needed time home with our family. I also wanted to let you know that it is the small things in life that makes someone happy...after we got the ok to leave, I told Mike I wanted to give something to one of the Moms up there on the fifth floor. I wanted to help her. Her name is Kim and her son Jeremy is 11. They have been there so long and still have so long to go. She is married, and has 2 other sons besides Jeremy. They are from Arkansas. Kim is up here with Jeremy alone while her husband is back home with their other sons. Kim is back and forth from the Ronald McDonald house with Jeremy. I went to her door tonight before we left and asked her if she would like to have our twin air mattress we bought just for Roman's room. She looked at me and said "are you sure" and I said" of course we are sure, we want you to have something more comfortable to sleep on while you are here with Jeremy." She said "oooooh, I got a new toy". The moral of my little story is for all of you to truly realize how lucky you are to have your families, your health, your homes, your own beds, your own showers, your own laundry machines, your own kitchen and refrig and stoves etc...see, Kim does not have all that right now, and she won't have it til after x-mas or so, maybe into the new year. So, when you are having a bad day, and everything is going real bad, just please remember there are many, many families up there like Kim on the fifth floor. And, they have it way worse than you do. I am planning on doing something from "Roman" to all the families on the fifth floor for the holidays. Any suggestions would be great. Just email me. Until tomorrow, we love all of you, and thank you for your on going love, support and prayers. HOORAY!!!Ourb baby boy is home finally! God, please, please keep blessing our Roman and please bless all the families on the fifth floor at the hospital. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 8, 2007 Hello to our family, friends and new friends! Well, today, unfortunately Roman did NOT get to come home. His blood pressures have been running real high so, they are giving him Norvasc to help bring them down. They did a renal panel on Roman tonight from his blood...and everything came back normal. So, Mike and I are STILL thinking it has to do with them pumping him with fluids...sodium chloride to be exact. HUMMMMMMMMMM....... too much sodium equals high blood pressure!!!!!!!! So, they are not going to pump him tonight with ANY fluids. Thank goodness! Hopefully, that will help with the blood pressures. Other than that, Roman is doing GREAT!!! Eating, drinking, playing, standing, walking around his room and giggling!!!! It is so good to see him back:) He did get platelets tonight just to keep him full. He is sleeping sound right now. The plan for tomorrow is hopefully, we will be going home with Roman:) I will update as soon as we get home to let all of you know. Radiation should start next Wed. I do not know all the details, but will let you know as soon as I know what the details are. And, to let all of you know what happened to our jeep parked in this garage here....some "@#$%&*!" hit the back of the jeep so hard they pushed it up against the concrete wall in front and hit the bumper in back so hard Mike could not get the hatch open. We let security know and hopefully we will find out who did this to us. Not that our jeep is anything fancy...it's the principle of the matter. Nothing like kicking us why we are down huh? Here we are with our son fighting cancer and someone does'nt have the decency to let us know they hit our jeep. Bad karma is going to come their way for not being honest. Anyway, pray we get to take Roman home tomorrow...and pray his blood pressure goes down and stays down. Sheridan misses her baby brother "Buddy" so much. Thanks for all the continued prayers and support. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 7, 2007 Hello to our family, friends and new friends! Today, our house was cleaned from ceiling to floor and everything in between. Marge Nastold, coordinated with best friend Sis, her daughter Kari, her other dear friend Carol, and Marges's daugters Julie and Kim. Together, they all chipped in and saved Mike and I ALOT of cleaning and preparing for Roman to come home. Our house was cleaned by a lady named Michelle. She is amazing!!! She was so sweet and she really wanted to make sure EVERYTHING was clean for Roman's homecoming. Our house looks immaculate and so nice!!! Thanks to the women who made it possible that Mike and I did not have to stress about having a clean house when Roman gets home. And Marge, thank you for thinking about us and wanting to make the heavy load much lighter. We love you!!! Now, on to Roman...today, was another good day. Roman played and walked in his room, he will not wear a mask or he could be outside the halls walking around or riding on a ride toy. He's 2, what do they want from him!!!!!!!!!!!!!!! His blood pressure is still high and they have given him something under his tongue to help bring it down and still giving him lasix. Here's the kicker...they try all day long to get RID of extra water and fluids in his body...but yet tonight...they have him hooked up to get 50 ml per hour of fluids. Does that make ANY sense at all...it does'nt to Mike and I and we will address it in rounds in the morning. Extra water and fluids make his blood pressure higher than it should be. DUH!!!!!!!!!!!!!!!!! I tell you...that place....and here's something else, they want us to go home tomorrow right???? And guess what...turn right around and come back on Friday morning at 8:30!!!!!!! NOT!!!!!!!!!!!!!!!!!!!! Once we are home, we are home! So, on that note, we are not sure if Roman will be home tomorrow or not. We are not going to leave if we have to be there right at 8:30 the next morning...we might as well stay!!! We do not want to come home and have to go right back up there the next day. Unless, Roman needs blood or platelets, but other than that, NO WAY!!! We will let them know that we did not do clinic visits on the oncology side and we will not be doing clinic visits on the transplant side. It's just that simple. We will go to clinic if it is absolutely necessary for Roman to be there. Otherwise, we are keeping him from the GERMS in the clinic and in elevators and in that hospital. Mom is going to give Mike a break for lunch and I will be taking Sheridan to and from school, then I will join Mike up at the hospital for a "nice" conversation with the docs and nurse coordinators about our so called clinic visits. We will remind them, that thru out 6 rounds of chemo, Roman has NEVER had ANY kind of infection or illness or anything else for that matter with himslef or his central line.(2 repairs, beyond our control). NO bacteria, NO nothing. We have to be doing something right here!!!!! We think we are doing the right thing by Roman and we are not going to change now. Not with his "winning" track record. So, I will update sometime tomorrow and let all of you know if Roman will be coming home tomorrow or not. We are so READY for Roman to come home to his new big boy bedroom. Oh yeah, I almost forgot, thanks to "Our Angel" Lauren, I got to go to the grocery store tonight. She was with Sheridan. We love you Lauren! What will we do when you leave us for good!!!!! Thanks to all of you for your love and support and most of all your prayers. God, please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 7, 2007 Hello to our family, friends and new friends! I just wanted to let all of know that I could not sleep thins morning. So, I got up early and decided to send an email to Oprah!!! I have been wanting to do it since Roman got diagnosed and since Lauren "our angel" has been such a HUGE help with Roman and our family. I told them briefly, as best as I could, our story. And, how I wanted to get childhood cancer awareness out there just like breast cancer is. Everywhere I go I see "pink"...no where out there is a "color" for childhood cancer awarenss. And by gosh, if Roman has to be the face to bring about awareness, then so be it. I just pray that Oprah's staff responds. On her website, it said she has enough staff to read ALL of the emails and possible stories to tell. I just pray that ours will be one of them. With Roman and with Lauren's tie in of how "angels" really do walk among us, hopefully that will get us in to bring about chidhood cancer awarenss. Our kids with cancer deserve that. I told her that I wanted to do it in honor of all kids who have earned tehir wings battling any type of childhood cancer. I told her at the end of my email..."Everyone knows what breast cancer is...NO ONE knows what Neuroblastoma is". I told her we need her help to change that. So, keep your fingers crossed. I so want a platform to get childhood cancer awarenss out there...what better way to do that than get on Oprah's show. I just wanted to share this with you and share in my quest to bring about change. Love, thanks and God, please keep blessing our Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 6, 2007 Hello to our family, friends and new friends! Daddy Here. Roman had another good day. He woke up pretty swollen this morning. He's just so full of water. His body can't take anymore extra fluid pumped into him. Most of his fluids are being removed so he has a chance to catch up. He ate a little more than yesterday. Of course the little stinker won't eat much for me though. He'll eat for Derney and Mommy, not me!! Thank heavens Mom is here during the day. His TPN (IV nutrition) has been removed this evening to allow him a good chance to eat. The goal is get out of here without having to use TPN. If he continues to eat and drink that may happen, keep your fingers crossed. I had Roman up and walking today, we took a stroll around his room a couple of times. He's still fairly wobbly but he's doing great. Jody's cousins Patty, Julie and kids took her and Sheridan to Frisch's today for a great visit. Sheridan got to see Roman tonight again on the webcam. She makes him laugh with her goofy faces. Good night. Love, thanks and God please keep blessing our Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 5, 2007 Hello to our family, friends and new friends! And, our Roman just keeps on making major headway now!!! He has eaten and drank today much more than yesterday. And, the best news of all is that he actually wanted to get down off the bed tonight and WALK over to his toy bin to get out his airplane!!! Mike called me right away and we were both just in tears. Mike said he even walked more later tonight. It feels like an eternity since our baby boy left us for this horrific part of his treatment plan. To see our son go thru what he has, just amazes us how his little body has taken such a "beating" and how great and fast he has bounced back is just beyond words or explaination. He just looks way better too:) And, he is not liking when the nurses do their blood pressure checks...so we know he is feeling himself again. Thursday is going to be the day we leave that hospital...praying and hoping for good and forever!!!!!!! We do not know what the future holds for any of us, but we do know that Roman is amazingly strong, amazingly unique and one hell of a cancer fighter!!! Roman has defied many odds...and he continues to do so now. Roman will have to go thru yet 12 rounds of localized radiation to his abdomin. Then he will be tested and scanned all over again before moving on to 6 months of oral chemo. Mike and I truly believe that our son is going to do GREAT, huge things with his cancer. What exactly that will be, we do not know right now, but look out future...here comes Roman Michael Fariello!!! !!! !!! We cannot explain this as Roman's parents, we just FEEL IT!!! We are so very ready for our son to come home. And, Sheridan is more ready than anyone. It has been a very long haul for our entire family. But, we cannot stress to all of you, who send us cards, money, gifts, food, time, energy and support above and beyond, that we could not and would not be making it thru all of this with out you. The most important thing that has made Roman withstand and defy so many odds, is the power of your prayers. They have helped us thru since April 25th. Please, whatever you do, please keep praying for our Roman. That is all for now, I am so exhausted and I have to get a little girl ready for bed. I have missed her this weekend. I have some heavy duty nighty night reading to make up with her. Love, thanks and God please keep blessing our Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
|
November 4, 2007 Hello to our family, friends and new friends! Boy oh boy, and my father in law thought the other updates were lengthy...just wait til he sees this one!!! Alot to say so here goes...today was another great day for Roman. He is till bloated and uncomfortable, but, making progress in the farting area:) He ate today...about 5 bites of choc pudding, some fruit loops, about 4 pringles, a green x-mas tree marshmallow peep and took a sip of choc milk!!!! So, quite a busy food day for our Roman. He needs every bit of it. They changed his pain meds today to Methadone twice a day. The pain doc seems to think that Roman got off to early with the Fentanyl because he had real bad shakes yesterday and today. The Methadone is supposed to correct that...we'll see!!!!!! Other than that, Roman is week when he stands on the bed, but, hopefully early this week he will get moving on walking around. Thursday is the magical day for him to go home. Please pray that happens. Since Roman has been in here, we had his bedroom painted and Sheridan's bedroom painted as well. Roman will have a big boy room with a twin bed when he comes home. His theme is planets, moon and stars. He loves all of the above. So, he will love his new room. Sheridan's of course, is a light purple color, and she loves it. Roman's is a deep blue color. It's very exciting to know he does not need a crib anymore...he's so used to sleeping in the big hospital beds, it only made sense to move him up to a twin. Today, my friends Deb and Audra came to eat lunch with me in the cafeteria. It was great to see them both and laugh. We all need laughter in our lives. Thanks to you both for sitting with me and making time for me. I love ya's. And, tonight for dinner, Aunt Jenn brought me McCallisters????? It was very good. I had yummy cheesy broccolli soup and bread, and a choc. chip cookie. Thanks Aunt Jenn, for feeding me and sitting with me in the parent room. You got an earful and an insight to what and how other families deal and cope with the same thing our family has had to cope with. I love you Aunt Jenn and thanks for being with me tonight. Also, my cousin from New Jersey is in town. Hi Cuz Julie and kids!!!! They came over to the house today to see Mike and Sheridan and guess what happened...Mike got a few hours of some much needed alone time...Julie took Sheridan for the afternoon and early evening. She loves her "new new jersey cousins", that's what she has called them since she met them a couple of years ago. Love and many thanks Cousin Julie for giving Mike a much needed break and I hope to see you and Patty on Tuesday!!! I told you this was a "windy" update!!!! I also would like to ask all of you to please pray for little Joe Melville and his family. He was the little guy I introduced at the spaghetti dinner who is 2 years out from diagnosis. He has ALL of his tests and scans to do this week starting tomorrow for a 2 year check on him. Please pray he remains NED (No Evidence of Disease). We love the Melvilles and wish them all the prayers and support for the upcoming week. And, on that note, I am going to try to get some rest while Roman is sleeping already. God, please keep blessing our Roman. Love you all and thanks for your on going support and prayers. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 3, 2007 Hello to our family, friends and new friends! Roman is doing better and better each day. He ate a few fruit loops today and had about half of a choc pudding cup. He did attempt to eat a goldfish and a bite of a choc donut but spit them out after chewing. But, the pudding was a hit. Mike and I have never been so excited over any kind of food going into Roman's belly!!! Which brings me to...Roman had an x-ray on his belly today because of the distended look and bloating...the x-ray came back normal. Thank God!!! They were hoping not to find any kind of blockage in his belly. All Roman has in there is alot of gas and air. He needs to just let out a real big one and be done with it!!! My sister Coleenie came up tonight and brought me some home made pasta and yummy sauce and bread. Thank you Coleenie! I so enjoyed my visit with her. It was SOOOOOOOO much better than a daggone burger Mike!!!! My husband made fun of me because as soon as I got up here tonight, an hour later I was already taking a dinner break. He is just jealous because I get home cooked food verses cafeteria food!!!!!!!! I love you Honey!!! Anyway, he is at home with Sheridan tonight. The kids got to see each other on the webcams and Sheridan acting goofy and Mike acting goofy made Roman smile a few times. And, that was all worth it. He has been thru so much, he is amazing!!! Mike and I are amazed at how much one little body can endure. Well, please pray that Roman's belly goes down very soon. And, they are looking at Thursday for us to get out of here...HOORAY!!!!!!!!!!! We have so much to do to get ready for him to come home. Iwill fill all of you in on that tomorrow night. For now, I will end my "wind bagging" and my father in law now calls me "Windy" because of my lengthy updates. I love it!!! God, please keep blessing Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 2, 2007 Hello to our family, friends and new friends! Daddy here. Roman is looking really good. His belly is a little distended. We think he is full of gas and it is making him really uncomfortable. Please pray that Roman farts!!! He's getting a lot less pain med and he's not itching so much. We are planning on being discharged Thursday as long as everything continues to move smoothly. Jody and I spent the afternoon together. We got to go grocery shopping. Yippee!! Thanks again to Lauren, Mom and Dad for allowing that exciting shopping extravaganza to happen. There is unfortunately some bad news. We heard that the little guy that needed Roman's room passed away. With a compromised immune system, his little body couldn't fight off an infection. He was only 21 months old. Please keep him and his family in your thoughts and prayers. We have good news also. We heard Corey's bone marrow results came back negative!!! Thank you for all your prayers and support. God please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| November 1, 2007 Hello to our family, friends and new friends! I am so very glad that my husband loves me like he does...it must be love when you can call your wife a goof, but it was for our daughter and whatever she wants right now...she gets! Sheridan got her progress report today for pre-school...needless to say that Mike and I were happy and shocked at what her teacher Miss Terri had to say. We were expecting to read that Sheridan talks too much and is very bossy!!! What we read was "Sheridan is a joy to have". And, that ALL of her classmates, only 11 besides her, like her and play well with her. We are very proud she is doing so very well considering this has been very hard on her not having normalcy and her brother and both parents under one roof at one time. Sheridan Bug, we love you all the loves!!! Now, onto Roman. It has been, we feel, like a detective kind of day.We have been trying to figure his pain cause out. He is in pain but not the kind of pain that we would think. I have been here with him since 5:00 and he only is in pain when he has to pass gas or poop. It's his bowels that are hurting him. I am going to let the pain team know in the morning for rounds. The Fentanyl he has been taking for pain since the rescue, I feel needs to be less. He is itching alot and it causes constipation. He certainly does'nt need that on top of his pain from moving his bowels. So, other than that, in between pain episodes, he played tonight with me and we watched Baby Einstein and not the Wiggles, can you believe it!!! Mike went home tonight to be with Sheridan and took her to Big Boy for dinner. I also wanted to save the best news for last...there was talk this morning in rounds that Roman could get to come home by the end of next week!!!!!!!!!!!!!! The nurse practitioner wanted to set a goal for late next week and we were of course ready for that wonderful news. Roman's counts are great! He is still not wanting to eat or drink but we hope by the weekend he will at least try for us, and he is playing well. So, please pray that Roman does get to come home to us next week. We will definitely keep all of you informed on when the big day will be. We love all of you and thank all of you for your continued support and prayers. God please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 31, 2007 Hello to our family, friends and new friends! Happy Halloween!! Daddy here. Today was pretty much like yesterday. I was expecting better but the day was still good. I guess my expectations are a little too high. I don't feel like his recovery can go fast enough. He got platelets this morning and is getting more tonight because of a nose bleed. If you have time and are able, please donate some platelets. There are lots of little ones up here that need platelets, apparently they are sometimes in short supply. The Childlife people here handed out goody bags with toys to the kids for Halloween. Roman got a stuffed doggy, a couple matchbox cars and a coloring book. Sheridan had a blast dressed as Dorothy from Wizard of Oz. Enclosed are some pics of the Bug and Jody. Sheridan looks adorable and yes, Jody does look like a goof. Love ya, Hun!! Please remember little Corey Nickell in your prayers, tomorrow is his post-transplant bone marrow biopsy. Pray it comes back clean. Also as a side note, I can't take the Wiggles anymore!!!! I'm going to rip my bleepin ears off!!! AHHHHHHH!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 30, 2007 Hello to our family, friends and new friends! Daddy here. Roman is doing very well today despite having painful diarrhea. We upped his pain button and that has helped so far. He's been awake most of the day sitting up and playing toys and talking. Basically starting to be himself again. I'm so excited, thank God I'm getting my little boy back. I've missed him the past couple of weeks. His body has been here but Roman hasn't. Mom had to take Sheridan to and from school today since Jody was down for the count with a migraine. Dad came up today to relieve me. I'm anticipating tomorrow to be even better. Hopefully we'll get him to eat soon. He had a few licks of a popsicle tonight. It's a start. This room we were moved to is much better. It's at the end of the hall and has two windows and is much quieter. God please keep blessing Roman:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 29, 2007 Hello to our family, friends and new friends! I just wanted to quickly give you an update and let all of you know that we, are still in room 516. And, guess what, we will be staying in room 516. I did not have to go off on ayone and they finally came to their senses and decided to keep us here and not subject Roman to ANY type of germs that could harm him or set him back. They are very lucky to say the least that I did not have to show my claws and roar this morning. Roman is improving a little more each day. He has been up all day so far today watching the Wiggles and playing in bed. Hooray!!! He is not wanting to eat or drink, but I am quite sure that will come hopefully in a few more days. We love all of you and thanks for your support thru out this long journey. We could not be making it as good as we are without all of you and your prayers. God please keep blessing Roman:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 28, 2007 Hello to our family, friends and new friends! Well, it has been needless to say an eventful day. Let me first start off by telling everyone, Roman stayed awake for about 4 to 5 hours today and tonight rocking with Duppy and watching the Wiggles!!! He is feeling a bit better, and he even laughed today at Duppy acting silly. So, our Roman is slowly starting to come back to us:) Mom and Dad came up earlier today to bring me food and give me a break and again tonight. "Our Angel" Lauren and her Mom Janine, picked me up tonight and took me to Red Lobster. I so enjoyed my time away with them. They are truly blessings from above for our entire family. Lauren and Janine, thank you for a wonderful dinner. I love you both. And, Mike carved a pumpkin this morning with Sheridan at home. She was so excited to use her carving tools!!! When I said in the beginning of the update that it was an eventful day, boy, was it ever. Roman needed blood today. His hemoglobin was at 7.4. Then, about 5:00, we were told that we were going to be moved because our room was needed for another patient. The room Roman was in had what they called an anteroom before you actually stepped foot inside where Roman's bed was. They use this room as a dressing area. The nurses and anyone who enters, has to be put in full gown, gloves and masks etc. Roman was not under those strict rules, so, the kid who needs that room has to be there because he has something contagious. Which brings me to my next point...we were moved to room 516. Only for tonight. Then sometime tomorrow we are going to be moved to room 518. Guess who was in room 518??? Yep, the little guy who has something contagious. And, over my dead body are they going to put my "healthy" Roman in a room where a little guy has something Roman could catch. I do not think so...I will not subject Roman to ANY person, thing, or germ that could harm his progress right now. Mike feels the same way and so does Mom and Dad. The reason we can't stay in room 516, is because they are going to be putting in some cabinet or something out in the hallway. So, guess what I am going to be doing tomorrow morning...yep, this whole 5th floor is going to hear me roar...I will not allow them to put Roman in that room. I don't care if the actual Hazmat Crew cleaned it. It's not clean enough for Roman. Not right now. Not exposing him to God Knows What!!!They will have to give me better than" they clean it from top to bottom and scrub everything" Well, I got news for them, I really could give a you know what about how clean they think the room is...It's not good enough for me. They are all about germs up here, but they don't make any sense in their policy. Right now, we are in room 516. Phone # is 636-1516. I will update if there is going to be a change. Please pray for me that I don't lose my cool with these people. Please pray that Roman will be safe from any germs. God, please keep blessing Roman. Love and thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 27, 2007 Hello to our family, friends and new friends! Well, my husband and his poll taking...he is so very silly. Everyone knows that if you want true details of anything, a woman will give you all the details and more. So, everyone who is part of Roman's following...is getting the best details from me and some drama too!!! Mike goes right to it. Everyone who knows Mike, knows that he is really not a talker, most men are not. Everyone who knows me, knows that I am a gabber, and I could talk to anyone and everyone. So, on that note, let my gabbiness begin... Today, Roman slept alot. His ANC was 12,500!!! That is truly amazing. Roman's tiny body is literally working in overdrive right now. Rebuilding his bone marrow. He was taken off of one antibiotic (cipro) because he's been without any fever and was taken off of a liver protectant called Actigall. We will continue to watch his liver each day with labs. He is doing as expected. He had a really bad nose bleed tonight right before Aunt Sissy and Aunt Coleenie got here with my food to give me a break. They just jumped right in to help me. I am quite sure they did not know that tonight they were going to be my nurses aids!!! They were a HUGE help. I needed both my hands and both of their hands as well to help Roman's bloody nose. He got platelets shortly after and is sleeping real sound now. I want to thank both of my sisters for being here for me at the right time. I love you both and you were so needed tonight as you could see. I love you guys and thanks for feeding me. And, Mike and Sheridan went to San Antonio church tonight for Roman's pizza party. Mike said it was a packed house for our son. We want to thank everyone who attended and for helping Rescue Roman. Well, we feel Roman is healing. Mike and I are very ready to get him better so we can take him home to his Sissy. She is ready for her brother to come home to her. I hope and pray that day will come soon. Thanks to all of you for your prayers, support and love for our family. The blessings are many and we are so grateful:) God please keep blessing Roman! Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 26, 2007 Hello to our family, friends and new friends! Daddy here. Roman's counts have amazed everyone yet again. His ANC just about quadrupled in one day, it was 4290. The words used in rounds this morning were "phenominal" and "wow". He's kicking butt and yet still pretty sleepy. We've reduced his pain meds and he still seems to be confortable. He had a little nose bleed this afternoon and they gave him more platelets soon after. Jody and I had lunch together today and dropped by my work, Perfetti Van Melle. Thanks to Lauren, Mom and Dad for allowing us to get away for a few moments. Also, thanks to Shannon for providing a home cooked meal for Jody and the Bug. I'm sure it tasted great. I want to take a poll. Who likes my short concise updates and who likes Jody's long-winded diatribes. Love, Thanks and God please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 25, 2007 Hello to our family, friends and new friends! Today, was a day we have been looking for since this all began. Roman's ANC (ability to fight infection) went from yesterday at 130... to today being 1,170!!! HOORAY!!!! His counts are on their way back up. This is a great start for Roman to start healing from the inside out. Mike and I never thought that numbers would make us happy!!! Not to mention understanding what ALL the numbers mean. We are going to be doctors when all this is said and done. Roman's puffiness and water retention has gone down, his fever finally broke, and I looked in his mouth tonight and his mouth is looking a bit better as well. His pain meds have been decreased and he is doing better than expected and quicker too. Today is day 8 post transplant. Roman is so very strong. He is the epitomy of strength. Never again will I ever complain of any pain after what our son has endured. Mike went home tonight to be with Sheridan and the Powells were meeting them there to have dinner and so Sheridan could see their new baby Greg and play with Joe. I also wanted to let all of you know that the Anderson Ferry guys, Kyle, Will and Donny have worn Roman's t-shirts and have passed out Roman's little ID cards. Will, tonight asked me for more cards, he said alot of people ask about Roman. I just wanted to tell all of you that the Ferry Guys, are amazing guys. They pray for Roman and talk to Sheridan all the time. They want to help in any way they can. And they do because I sometimes get to ride for free(SHHHHHHH, don't tell anyone). They are just a great group of guys and I wanted to acknowledge them for helping out our family and being so good to us. Thanks Ferry Guys!!! For those of you who don't know, Anderson Ferry is located on River road in Ohio and Rt 8 in Kentucky. It makes life easier for us to take the ferry back and forth. Also, Mike and Sheridan will be attending the Pizza Party on Saturday in Roman's honor at San Antonio Church. I will be here with Roman for the weekend. Please, continue the prayers, they are helping all of us get thru this. God please keep blessing our Roman. Thanks and love all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 24, 2007 Hello to our family, friends and new friends! Daddy here. We have great news!! Roman had an ANC of 130 this morning!! Yippee! It's not much but it's a start. He started showing numbers on Days 6&7. Most kids start showing counts between Days 10 through 14. Roman is a little ahead of the game. We're very excited yet not surprised with his progress. He's taking this round of chemo like his 6 previous treatments, he's kicking a&#. I'll keep telling you that he is a strong little boy because he is. He's been pretty tired today. I think his body is busy rebuilding it's bone marrow which is taking a lot out of him. He's a lot less swollen today and a little grumpy. He slept great last night and so did I. Roman got more platelets this morning and I'm sure he'll get some tomorrow. We want to thank Mikki Schaffner for the great pictures she took for our family on Roman's precious 2nd birthday. Awesome job! We love you Mikki. Thank you for your continued prayers for Roman and our family. Good Night. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 23, 2007 Hello to our family, friends and new friends! Pleaase, do not worry...Mike and I were just too wiped out last night to do an update. I already checked my emails this morning and found many many emails wondering what's going on with Roman. Since the last update, Roman's fever has been goin up real high as 104 and as low as 99. He has not been without any fever since this all began. He is getting 2 antibiotics and tylenol for the fever. All of the cultures they did on his stool and his central line,have come back negative. So, the reason for his fever is just from the chemo...Mike and I call that a "chemo fever". He was a bit more alert yesterday. The occupational therapist came in and played with Roman to get him "moving" around. She was surprised at how well Roman did. They drew pics and stuff like that. He still is swollen but Mike said Roman looked less swollen from 4 rounds of lasix given to him in a 24 hour period. They did a CBC last night and Roman's white blood has been reading .1 and last night it was .5 So, we pray and hope that this is a sign that Roman's counts will start going back up. They also did a chest x-ray just to make sure the mucositis is not IN his lungs and it showed it was just making him swell up all over. Mike's boss Kevin and his co-workers Sue and Jason picked Mike up yesterday and took him to lunch. Mike said he had a great time seeing them. And, his brother Andy picked Mike up last night and took him to dinner. Thanks again Uncle Andy!!! And, the other day when I was there, I forgot to mention that Pastor Shawn Edwards from Hebron Baptist Church, where Sheridan goes to preschool, came up to see Roman. He said a beautiful prayer for Roman and our family for Roman to start healing. The church and school have just been so wonderful to our family. We thank them in every way possible. And, to end today on a high note...it's picture day for Sheridan at preschool!!! She is so excited. She told me she wanted her hair in pony tails for her pic. And, last but not least, Roman's birthday pics are available to view and purchase at www.mikkischaffner.smugmug.com and, the password is just the number 2. Enjoy all of them. Love, Thanks and God please keep blessing our Roman. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 22, 2007 Hello to our family, friends and new friends! What a tour of love that was for me... yesterday, last night and most of today...spending literally just about every waking moment with Roman. As soon as Mike relieved me tonight, I had a hard time leaving Roman. I guess I have succumb to the fact that he is REALLY sick right now. And, I just cannot bear it. As soon as I got on the elevator to go to the parking garage, the tears just flowed down my face uncontrolably. People were looking hard at me with wonder. I finally had to let it all out that has been building for a few days. I cried in the car a few minutes before I could actually drive. I just pray to God that Roman's pain is minimal that he is enduring. I don't care what they say...any amount of pain meds is NOT enough to take it all away for me as his Mommy! My heart aches and breaks for Roman as he is going thru the most aggressive treatment to save his young life. I wanted to share with you 2 of the pics that Mike took before I left tonight. Roman's face says it all!!! And, the fun pic of Sheridan is of her at a birthday party on Saturday. She had a blast! Of course, she did not want to leave the party and all the kids. Roman got platelets this morning and also had lasix earlier today. He was running a hig fever as well. His mucositis is much worse today than yesterday. His mouth inside is swollen and very red and sometimes blood tinged on his pillow. He was going to get lasix again tonight. For those of you who do not know, lasix helps him pee more and expel the fluid retention he has. It helps some, but not all the way obviously. Mike will be up there for the next 3 nights. I will be home with Sheridan. Mom and Dad will do the breaks for Mike. It has been a very long day for me. I am mentally, emotionally and physically exhausted. Thru all of this for Mike and I, we have Sheridan. Who at the end of each day, wants her Mommy or her Daddy to read her a story, tuck her into bed and kiss her goodnight. And, she always asks...Mommy, will you be here in the morning, and vice versa when Mike is with her. Please pray for her. This is extremely difficult on her as well. Her entire world has been turned upside down. Please continue to pray for Roman to heal and strength for Mike and I to keep on going. Love, Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 21, 2007 Hello to our family, friends and new friends! Just when you think your days could not get any worse...when I left Roman the other day, he was just a bit puffy...today, he looked ten times more puffy and just plain miserable. Each time I come to see Roman and do my tour of love with him, he changes...everyday he visually changes. When they told us it would get worse before it gets better, they were right on. Roman did get a blood transfusion yesterday and some platelets as well. He also did lasix yesterday and today. Which helped him get rid of alot of fluid he needed to expell from his tiny body. His kidneys are functioning just fine and are working with the lasix. His blood pressures have been running a bit high as well as a high fever. But, tylenol helps his fever. Keeping his pain at bay with the highest dose we can give him now, and with trying to help Roman get rid of this yucky mucositis, helps with his blood pressures. He does have oxygen close to his mouth lying on the bed to help him along if needed. The strange surprise to all of this, is that he is more alert today, talkative, and since he puked out his feeding tube yesterday, he has not thrown up anymore...not even his meds since he now has to take them by mouth. He is so strong and such an inspiration to me, to our family and to all of you. He just keeps on day by day doing what he needs to do. He DOES NOT want you to stop rocking him...the minute you stop moving...he lets you know it!!! Mike went home today to spend some much needed time with Sheridan and away from this hospital room. My sisters, Maureen(Sissy) and Coleen(Coleenie) came up today and Coleenie made me some of our Aunt Virginia's stew...it tasted so very good. Something home cooked...and very comforting. Thank you to you both...I love you and I know it was very hard to see Roman in a bad way... they got to peek and see him thru the window in the door. We cried, and we hugged and we cried again. No one wants to see any child go thru what our Roman is going thru right now...but, it will get better soon. And, finally, Karen Carter, Caroline Carter's Mommy, emailed me and told me there was an end in sight for us. Coming from her, that meant more than any of us could only imagine. Thanks to you Karen Carter for your amazing strength and your support. You keep me going knowing that your Caroline is watching over you and your sweet family. Your ability to move thru life is such an inspiration to alot of people. Including me:) God bless all of you, God please keep blessing Roman and thanks to all of you for your support and prayers. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 20, 2007 Hello to our family, friends and new friends! Daddy Here! This has been an interesting day to say the least. Roman puked up his feeding tube today while sitting on Mom's lap. I was a little freaked out because I didn't know what it was at first. It was gagging him so I had to pull it out through his nose. Yuck! We'll have to see it goes without the tube. The rest of the day has been pretty good though. His high fever stayed away for most of the day until about 8:30 tonight. He sat on my lap most of the day and we watched the Wiggles and rocked. He was pretty alert and talked alot. He finally had enough and crashed for a nap around 5:00. Please keep praying that his fevers aren't the result of infection. His fever tonight is beginning to fall with the help of Tylenol. Overall he does fairly well until fever kicks in. Sheridan and Jody went to a birthday party today with about 30 other kids. Sheridan had a blast. She actually took a nap when the got home. For those of you who don't know Sher, it's a shocker she actually shut her eyes for a nap. She's wired from the moment she wakes up in the morning until her eyes shut at night. Until tomorrow, Good Night. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 19, 2007 Hello to our family, friends and new friends! Daddy Here! I don't feel like saying much today. Roman is miserable. I just witnessed the mucocitis in full force tonight. Gross! There is light at the end of the tunnel though. As soon as his counts recover, his little body will begin to heal. Thank you all for your support, love and all of your prayers! I hope nobody has to go through what our family is experiencing now. I can't even put into words what we are feeling. Jody and I had the chance to go to lunch today while Mom and Dad spent the afternoon with Roman. Sheridan played with Lauren today, or should I say, Sheridan drove Lauren nuts today. I have to go to prepare for the night with Roman. Good Night. Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 18, 2007 Hello to our family, friends and new friends! Today, was another day seeing Roman as we have NEVER seen him before. He is in pain right now, and Mike and I can not bear it. If we could take it all away, we would. People keep telling us that it will only get worse before it starts to get better. People meaning medical staff. Easy for them to say right??? It's not their baby boy lying here like this.To Mike and I, the worst was on April 25th. Sheridan missed her Daddy. Mom told me when Mike came to pick her up, she ran into his arms. Myself on the other hand, was preparing for a long night up here tonight with Roman. He got platelets today and they upped his pain meds for him too. And, early this morning, Roman spiked a fever. So, just please pray that this time goes by very fast for our family.Tonight, Mom came up to sit with Roman while Anne, her friend Mary and Aunt Jenn took me to dinner at Don Pablos. It felt great to be out to dinner. I really enjoyed myself with them. And, yes everyone...they made sure I ate dinner, and even dessert too!!! I have to tell you that Debra Nickell called me tonight in the hospital...told me Corey ran a fever today while in clinic and that they were going to be admitted for a couple of days just to be safe. So, please, tonight for your prayers, pray for Corey and Roman together. Our families are going thru this journey together. Roman is right on Corey's heels with the treatment plan.And, I finally got to meet Debra's Mom! It was great to talk to her. So, my night "alone" has not been to terribly bad. Also, I wanted to share with you that Mike really did not want to leave Roman. Not even with me!!! He just feels like this is where he belongs...taking care of Roman. I had to remind him, that his very much Daddy needed daughter was ready to see him. So, please pray for Mike that he realizes it's ok to leave Roman for a day to take a much needed break and to sleep in a real bed and take a shower. I love you Mike Fariello and we are going to move mountains together and we can handle ANYTHING together!!! Your strength right now as a Daddy goes far beyond any words could ever describe. I love you Mike and thank God for you!!! Thank you all for your support, love and most of all your prayers! God please keep blessing our Roman:) Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 17, 2007 Hello to our family, friends and new friends! Daddy here. Roman got his stem cells today. It was a pretty simple process. We were expecting some huge stage show with lots of bells and whistles. It was basically as simple as a blood transfusion. They pretty much just hung a bag of his cells on the pole and let it drip. The preservative in the bag give it a funny smell though. The room smells like creamed corn but to me his breath and body smell like strawberry jam. Weird! Everything went smooth. He was apparently feeling a lot of pain today. He was very clingy and sleepy. We got him some pain meds and he immediately acted like a new boy. We now have him on continuous pain meds to control the mucositis that is setting in. He didn't moan or whimper one bit even though he was in pain. He just layed there and took every bit of the pain. I just thought he was exhausted, I had no idea he was in pain. I could kick myself for not knowing. He is the strongest little son-of-a-bugger I've ever known. He never ceases to amaze me. A little two year old boy is teaching his Mom and Dad a thing or two about strength and endurance. He will be in a bad way for the next week or two while his counts recover. It will be quite few days of vomit and diarrhea. Fun! It's time for me to try and get some sleep tonight. Good Night! Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 16, 2007 Hello to our family, friends and new friends! Daddy here. Roman continues to follow along as expected, no complications. He is extremely exhausted today. This course of chemo has really kicked his butt. He did manage to get up out of bed twice to play a little. Each time wasn't very long, but any amount of play time is good. He didn't sit up to say hi to sissy on the webcam tonight, he is just wiped out. Tomorrow he is scheduled to get his stem cells. Yeah! Jody is coming tomorrow so we are both here for the transplant. Please continue to say prayers for our baby boy that he doesn't get ill while his immunity is gone. Pray that his counts climb back quickly. I ran into my co-worker, Sue, in the lobby on my way to lunch. We lunched together and I vented a little. Thanks for the lunch Sue. I also had dinner with my brothers, Steve and Andy, tonight while Mom sat with Roman. We talked about football and what not. It was much needed. Thanks guys. I need to try to catch up on some sleep tonight, so I must say good night. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 15, 2007 Hello to our family, friends and new friends! Daddy here again. Roman got his feeding tube this morning. It was a rather traumatic experience for Roman and Jody. He wasn't put under for the placement, just imagine that moment. It took four grown adults to hold him down and he still almost slid off the table. Give 'em hell, son! Roman's feeling pretty crummy right now. All he wants is to be held and rocked in the rocker. I've been in the rocker the past 5 hours with him, my butt can't take it anymore. He's finally sleeping for the evening. His chemo ended yesterday, and now his counts will slowly bottom out the rest of this week. He's going to be in a lot of pain pretty soon, I can't bear the thought. His pain will be managed by the pain team though. Sheridan and I enjoyed our time together. We went to dinner and played with her new castle for hours and hours. While on our way to Frisch's, Sheridan said to me "I want to sit next to you Daddy because I love you." Talk about ripping a man up. All I could say was "I love you too, Bug." Lauren came over early today to be with Sheridan while Jody and I went to lunch at The Olive Garden. Yuck! You owe me one Jody!! It was good for us to have a little time together, although guess what we talked about. There's no escaping it, is there? I'm ready to get a little shut-eye. I say to you, Good Night. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 14, 2007 Hello to our family, friends and new friends! Sometimes, I just don't know where to begin because this is such an emotional roller coaster. Today, I was blessed in 3 ways...the first way, was my mom in law...she decided to come up after church today and spend the afternoon and into evening with me and Roman. I got to take a much needed break from the room and from Roman for lunch. And, it was just great having her here with me...anyone who knows me, knows that I am a people person and I love to talk. I get very alone up here with just me, Roman and the WIGGLES!!! I love you mom and thanks for spending the day with me and Roman. Now, onto the second blessing today...Lauren, "our angel" came up tonight to bring me dinner and eat with me and keep me company. She knows that it kills me to not have that people connection on a daily basis. Lauren, I love you, we love you! You are truly an amazing young woman. And, I apologize for you having to hear all the horrible Mom stories in the parent lounge...it truly does make all of us appreciate what we have. And, I know you get that...you got that when you offered yourself to Mike and I and our family for FREE!!! And, onto my third blessing of the day...seeing Roman so sick today, just laying around, sleeping alot, wanting to be rocked...made me bring the web cam and computer to him in bed so he could see his sissy tonight. At first he was just laying there...then, all of a sudden, he sat up, looked at her and listened to her voice. It is very emtional to see them interact on a computer. He finally started making faces at Sheridan and Daddy on the web cam and they did back to us. We found ourselves being silly and acting goofy on the cams. For a moment, it sounded like "fun" for them to be laughing and giggling. I never thought that we would ever have to communicate this way ever, but I am so grateful that we can. Roman has his procedure at 8:30 to insert the Nj tube in his nose down to his tummy. Pray that it goes well and that he leaves it alone. I will be home for the next 3 days and nights. Mike will be doing the updates up here. We love all of you and thank all of you for keeping our son in your daily thoughts and prayers. It means more now than you will ever imagine. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 12, 2007 Hello to our family, friends and new friends! It has been another very long day here at the hospital. Mike is home with Sheridan tonight and tomorrow night. Mom and Dad came up this morning to give Mike a break and I got here at 4:30 to send Mike home. Sheridan had a blast today with her aunts and cousins at the farm in Indiana. She did a corn maze, moon bounce, fed farm animals and got to ride a pony! And, I am quite certain that her aunts took awesome care of her and gave her all the attention she needed. Aunt Sissy and Aunt "Carneenie" we love you and thank you both for making Sheridan's day at the farm a funfilled one. What she so needed was to have some fun:) Now, on to Roman...not much different today than yesterday. Got sick a couple of times and wanted to be held alot and rocked in the rocker. He did however, get a sudden burst of new founded energy tonight when he saw his sissy on the web cam and heard her voice. He got down so fast from his bed and straight to the computer to see her. And, to see that...was priceless for Mike and I !!! It amazes me that as sick as he is, as soon as Sheridan is on the scene, nothing else mattered to him. The bond they share even though they are so young, is a beautiful thing for a parent to see. Tomorrow will be another day closer to Roman's stem cell rescue and one day closer to all this being over. I miss my family terribly. It was way too quiet at our house. I miss all the noise and chaos each day brings at our house. Well, Roman is sleeping and I am soon to join him. We thank you all for your prayers and continued support at this most difficult time. Love and God Bless Roman!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 11, 2007 Hello to our family, friends and new friends! Well, it has been a very emotional day. I had to hear Sheridan ask many times for her brother. And, it just makes my heart ache inside knowing that she is missing him so badly. Tonight, Mike is home with Sheridan so she can see her Daddy and I am here with Roman. He did get sick tonight a little bit. I think it's all the oral meds he has to swallow down that gets him. Besides that, he is drinking much less today and eating less too. This chemo is evil!!! His energy level though is not suffering. He totally amazes me with how much energy one tiny body can have. This evening, Mom came up to give me a late dinner break. To my surprise, Debra, Corey Nickell's mommy, was up here with Corey to get some blood and to get an immunity booster. Debra, we should form a board of moms up here and get things the way they are suppose to be!!! And, her and her sister brought me dinner from KFC. So, I got to eat with Debra and we got to talk and visit and I met some other moms up here in the parent lounge. There is only one other little boy, who is 3, who is up here for Neuroblastoma right now. He just had his transplant recently. There is also a family up here with a 17 year old son with a rare anemia disorder and to make matters worse for them, when they were testing for donors in there family (there are 4 boys) one of the other brothers had tested positive for the same disorder. See, just when we think we have it horrible, another family is going thru double jeopardy. And, they are from Florida, not even from here. All we can do is pray for that family. Well, on a lighter and brighter note...Sheridan and Roman got to see each other on the web cams tonight. Roman smiled from ear to ear as soon as he heard her voice and Sheridan was all smiles to see her baby brother. Talk about emotional!!! Words just don't describe that feeling seeing them so happy to see each other. Thank you God for making technology so amazing for my kids to be able to see one another:) And, I did get to see my husband for a brief time. Mike, I love you more than the world. You and our family are my world!!! Roman is asleep and I am going to get ready myself. We love all of you and thank you for your prayers and on going support. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 10, 2007 Hello to our family, friends and new friends! This is Daddy writing tonight. Yes, Daddy finally speaks! Day one is half over and its going fairly well. Roman did get sick today before he was due for his second dose of anti-nausea meds. We are adding something extra to ward off the nausea. It didn't take long for me to get ticked off at the lack of communication around here. I'll spare you the details, just know the problems are taken care of for now. Mom and Dad came up twice today to relieve me so I could eat and get away. Roman is driving me batty, he runs around this room like a mad man. He is an absolute wild man. He's as strong as an ox. I knew I gave him a strong name for a reason. I can't wait to get home tomorrow and see Sheridan. It's awful to have my family split apart. It has only been two days and I long for the day when Roman comes home. To lay my head on my pillow at the end of that day knowing all four of us are under one roof will be sweet relief. This absolutely sucks! Sheridan is going to take this as hard as Jody and I. Please keep her in your prayers as well. I Love you, Bug! I'm setting up webcams so the kids can see each other every day. We hope that will help them out through this long month. On another note, Little Corey Nickell is home after his long ordeal. (We inherited his room at the hospital.) Please keep Corey in your prayers as well. Go Corey!!! Roman is now asleep and that is my queue to sleep as well. I Say, Good Night. Love and God Bless! Mike, Jody, Sheridan and Roman Fariello:) |
||
| October 9, 2007 Hello to our family, friends and new friends! Since last night's dinner, it has been one emotional roller coaster of feelings here in the Fariello household. Mike and I both talked to Sheridan and told her that Buddy will not be home for a while. And that he needed more medicine in his central line to make him better...the first words out of her mouth were...I want Buddy to stay here and play with me!!! Talk about a mother breaking down...I lost it... but, caught myself rather quickly. I held the napkin over my eyes so Sheridan and Roman could not see the tears going down my face. Then today, was just a load of emotions for Mike and I from nerves, to fear, to tears all over again. But, thru it all was strong, brave, little Roman. He was so good today for all the nurses and docs. He has been gone from hospital life for over a month and today just stepped right back into his role as cancer fighter!!! He had a small surgery today to replace his central line in his chest. He did very well. The surgeon was able to go right back into the same hole in his chest with a new central line. Good for Roman so he does not have any new holes in his chest. The plan for tonight was to give him fluids and get him well hydrated for the chemo to start by 10:00am or so tomorrow. Etopiside and Carboplatin run continuously for 96 hours straight and Melphalan runs for 30 minutes or so for 72 hours. The 3 drugs combined will wipe out Roman's bone marrow. And, so everyone knows, I will be spending Thursday, Saturday and Sunday nights up there while Mike will be up there on Mondays, Tuesdays, Wednesdays and Fridays. At no time will either Sheridan or Roman be without a Mommy or Daddy. And, with the help of family and friends, Sheridan will be kept very busy. She needs to be busy now. Well, that being said, I have to get a little girl ready for bed. Please keep praying for our Roman. We will update tomorrow again. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 8, 2007 Hello to our family, friends and new friends! Well, we just the word on when we have to report tomorrow for admit for Bone Marrow Rescue...we have to be there at 8:00am...which means in our terms here, that Mike and Jody are going to be getting up real early to get everything packed in the car for our journey to the hospital. Roman will be having his Central Line replaced as well. That procedure will be at 1:00pm or before. Roman's Central Line has been repaired now twice and is too risky to go into the Stem Cell Rescue with it that way. Reasons being...the risk of infection is extremely high as well as the repaired lines not holding up during and after the rescue process. Which brings me to my next point...I know there are many of you who would love to come and visit Roman at the hospital and for some strange reason, the hospital thinks that would be ok too!!! However, Mike and I, do not agree. As Roman's parents, we have to do what we feel would be the best for our son. That being said, we ask that no one come to visit Roman up at the hospital. It is just way too risky for him. Sheridan is in preshool and will not be seeing her brother thru out this long journey. She will however get to see him via web cams. Thank goodness!!! Mike and I are scared of the unknown...scared seeing our son very ill...scared seeing him go thru this. But, we do know in our hearts, that Roman will be in God's hands as he has since April 25th. Roman will make it thru this, just like he has all the other rounds, surgeries, shots, procedures, medicines, etc. He is strong...he is a fighter!!! Mike and I will be updating from now on daily so all of you who are praying for our son can be involved with his daily progress. Thanks for all your support, love, time, energy, and most of all prayers! Please keep them coming. Roman needs them now more than ever thru out this journey. Love and thanks! God please keep blessing our Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 7, 2007 Hello to our family, friends and new friends! WOW!!! What an amazing benefit dinner for our son Roman!!! The night was just awesome for our family. Seeing so many people even from the past for me!!! Mike and I would love to say a few thankyou's...first to my sister Maureen (she is my Sissy) it meant more than you know to Mike and I that you were there helping Anne out with the front of the stage...and it meant even more to me that you and I could "go back in time" together at Holy Family. We as sisters, have ALOT of family and childhood memories there, we love you so much and we will be needing you in this next phase of Roman's journey!!! To one of my best childhood friends who I grew up with who was back in the kitchen ALL day cooking and cleaning up ALL last night...Michelle Foster (Mitchie) we can't thank you enough for all your hard work and we love you! To Anne's sisters Mary and Sarah and to Mom and Dad Kindt...ever since my Mom died in 1993, you all have been there for me as my "substitute family"...I love you all and thank you for your hard work. To Aunt Jenn's entire family and brother Randy's army of friends, we cannot thank you enough for everything...words just don't seem like enough for all you have done for Roman, Sheridan and for us. To Sis and Kari, you both are in my hearts and both of you are amazing women! To the Melville family, thank you so much for coming...it was so important for our family and friends to see that another family made it thru all this!!! To the Vonder Meulen family, we are so glad to finally meet you and hug all of you! We know Emily definitely played a role in this from heaven!!! And, I wanted to mention that thru all the people last night, in walks my Godmother, Ginny Morano! We have lost touch since my Mom died in 1993 and she found me again!!! This time, I will not lose contact with her! It moved me seeing her and just so many people from my childhood and friends of both my parents. I enjoyed myself so much and there was a reason from up above that this dinner was being held at Holy Family...so close to my heart! Well, and just a loving thank you to all who attended to help our son. I know everyone enjoyed seeing him running around all over and being a normal 2 year old! I will update again probably when we get admitted and settled into our room on Tuesday. We love ALL of you and can't thank you enough for your prayers, love and support! We need all the prayers to continue!!! God Bless! Jody, Mike, Sheridan and Roman:) |
||
| October 5, 2007 Hello to our family, friends and new friends! I wanted to just send out a friendly reminder about the dinner on Saturday at Holy Family...we are expecting a HUGE turnout for Roman and our family. If we get as many people as we think are coming...well, it's just going to be HUGE!!! Also, I want to please ask that if you are coming to the dinner, I will be having hand sanitizer for everyone to use as soon as you come into the cafeteria and individual hand sanitizer wipes on the tables. This is for Roman's sake. Peoples hands carry all the germs and we want to do the best we can to prevent him from getting anything 3 days before he goes in for Stem Cell Rescue, not to mention it's just good to use anyway for all of us. Which leads me to please ask, if you or your child has a fever, runny nose, coughing, please stay at home. We understand. Roman will be there on Saturday and we cannot afford to have him get ill. I know that all of you will want to hug or kiss Roman, I wish I could tell you that would be ok, but I cannot. So, just admire Roman from a distance please. I also wanted to remind all of you that are bringing desserts and treats...I cannot stress to you enough the importance of our NO PEANUT RULE!!! You cannot go and buy bakery cookies/cakes in a store, more than likely they are cross contaminated. In a bakery, some things have peanuts on them, there's where we cannot risk the cross contamination factor. If it is made or prepared ANYWHERE where there is peanuts, please don't bring it. Also, if you are reading a package, it will let you know if there are peanuts in it or if it was processed in a place where there were peanuts. If the product does NOT tell you what's inside...don't bring it! I am available for anyone who wants to ask if a food is allowed. I will gladly answer any questions about it...I want all of us, including Roman, to have a great time on Saturday and I know that all of you are looking forward to seeing him!!! Please contact info@rescueroman.org with any questions or concerns about peanuts. For those of you who have my number, please call me with questions. We hope to see you at the dinner! Love, Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| October 3, 2007 Hello to our family, friends and new friends! Wow!!! We have wonderful exciting news to share with you!!! Roman's story is "making the big time" so to speak. Thru Roman's allergy to peanuts and battling stage 4 neuroblastoma, he is gettting recognized on a world wide level thru the internet. The website is called Allergykids.com
I have spoken to Robin O'Brien, founder and mother of four kids. She was thrilled to help get Roman's story out there. This all came about thru the Vonder Meulen family who lost their daughter to a peanut allergy. She had a deadly reaction from eating a sandwich at a local sandwich shop. The Vonder Meulen's daughter Emily, and parents Paul and Catrina, learned of Roman thru my father in law at St. Dominc Church in Delhi. He went to Emily's funeral and told Paul's wife about Roman's peanut allergy. It is just amazing how God works in and thru our lives at different times. When Paul just learned about Roman, he felt he wanted to help in the biggest way possible. And, did he ever! Thru the Vonder Meulen's pain and suffering with losing Emily, comes support for our Roman. Support we could not even imagine that would be given to us on such a HUGE level. We thank the Vonder Meulen family for their love, support and making Emily's remarkable life be a testimony to help Rescue Roman and all kids battling severe food allergies. Also, we want to thank Robyn O'Brien for wanting to help Rescue Roman on such a HUGE national level. Again, we thank ALL of you for your love, support and prayers. God please KEEP blessing Roman:) Jody, Mike, Sheridan and Roman Fariello:)
|
||
| September 30, 2007 Hello to our family, friends and new friends! It has been a real exciting weekend! Friday night we took the kids to Strickers Grove for the annual FOP picnic. Sheridan and Roman got to see their Aunt Sissy, Uncle Chet, Aunt Coleenie, Uncle Dennis, Aunt Kim and all their cousins! They of course had a blast riding all the kiddie rides they have there. And, eating cotton candy!!! Then, on Saturday afternoon we had "our angel" Lauren come out to sit with the kids (they were so excited to see her and play with her) while Mike and I went to dinner with the Powells (dear friends of ours). Mike and I so needed that time with the Powells...for they make us laugh til it hurts:) And when we got home, we started to put the kids to bed and Mike noticed...you are never going to believe it...another tiny hole in Roman's OTHER lumen (line). So, we of course called the BMT doc right away and we did not "panic" this time because there was no blood like the last time around when this happened in Gatlinburg. It was clamped off. So, we cleaned the line and sealed it. So, tomorrow at 10:30, Roman has to have his line fixed just like last time and he will have labs done there as well so we know what his counts are. And, we get to see Roman's bone marrow doc to sign the consent forms for the rescue. Busy Monday! Getting back to the busy weekend...today was the day we celebrated cousin Ian's 1st birthday and the kids, of course had another fun filled day...running around and playing outside and being "normal". So, outside of the tiny hole incident, it was a great weekend for us and Roman and Sheridan. I just wanted to also remind you to check the Cinti Enquirer tomorrow (Monday) for the Hometown Hero section..."our angel" Lauren should be in there as well as Roman's story. I hope it is in there...the writer was almost sure it would be this week. And, a look ahead to next weekend... Saturday, the spaghetti dinner and Sunday Roman turns the big 2. I will do another update again this week. I hope all of you enjoy the pics of the kids!!! Love, Thanks and God Bless!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 26, 2007 Hello to our family, friends and new friends! It has been a very long and very worrisome past 2 days for Mike and I, our family and all of you who have been praying for our Roman. We just got word that Roman's bone marrow biopsy was "CLEAN"...NO CANCER CELLS LEFT IN HIS BONE MARROW!!! !!! !!! I made our coordinator repeat the results to me so I would not get it incorrect. Mike shouted out loud on the phone with me at work when I told him the news! I gotta tell you all that I have NEVER in my life been so scared to hear a test result. This means Roman can go on ahead with the stem cell rescue that is scheduled for October 9th, followed by radiation of his abdomin (original tumor site) and then 6 months of oral chemo here at home. Roman still has so much to endure and so do we as his parents and of course Sheridan. The rescue part of this is going to be rough on her in the worst way. But, we have made it this far, and I know we can make it thru anything together as a family unit. This has made us ever so stronger as a family. If we can endure ALL of this...we can endure ANYTHING!!! And, that did not come without the prayers, love and support from all of you. We appreciate all of the love and support you have shown for all of our family. I also wanted to let all of you know that Roman's hearing test was today. The left ear is just fine...the right ear has shown some decrease since the last hearing test. Just have to watch and keep an eye on the right ear. Nothing found to warrant any hearing aids. He will have many more hearing tests to come. Right now though, I want to spend a GREAT and WONDERFUL night with my family, and rejoice in the fact that our son has come a hell of a long way since April 25th, and he has conquered and endured more than any other 23 month old I have ever known. And Mike and I as his parents, are so in "AWE" with Roman. He has taught us so many, many things. We love all of you and God Bless you! God please KEEP blessing Roman!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 25, 2007 Hello to our family, friends and new friends! To start off, we have no bone marrow results as of yet. We could maybe hear something tonight about the aspirates...if not, then we will hear tomorrow for sure. Today, Roman had an eye exam. His eye doc was very pleased to see that tumor shrink as it has and was also pleased that Roman's MIBG scan came back negative. I asked the doc, just because I am a curious Mommy, about what if Roman's eye needed radiation...he said, vision loss was a major concern for Roman, and cataracts and just vision impairments in general. So, thank you God for sparing Roman's vision!!! The doc also was pleased with Roman's focusing and eye movement. That was a major concern with the tumor being on the upper eye lid like it was. So, good news from the eye doc... HOORAY!!! Also, the doc asked me if it was ok to take a pic of Roman so he could show all his colleagues at the UC board of Opthomology...and I of course said absolutely. If Roman can be used for a learning tool for any doc to see how Roman's tumor took over his eye like it did, than so be it. I wanted the doc to use any and all info about Roman to help other families out there. So, tomorrow Roman has a hearing exam in the morning. His last exam went well, but they wanted to give him a change of atmosphere for this exam...so it will be at the Kentucky office just like today's eye exam. PLEASE keep praying for Roman's bone marrow biopsy to come back NEGATIVE...Mike and I are on pins and needles waiting for this test result. We feel our lives are just dangling right now waiting for this. We love all of you and can't thank you enough for ALL of the love you send us. The support is amazing! God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 24, 2007 Hello to our family, friends and new friends! Roman did really well today with his bone marrow biopsy. He is a bit sore and we are giving him some tylenol to help him tonight. There were no major issues to let you know about except that they pushed Roman back a half hour or so because of another patient. He was supposed to be 2nd in line for biopsy and he ended up being 3rd in line. And, of course, I questioned it and I voiced my anger that I was not a happy mommy by then. But, all in all, things went fairly well. Mike and I just prayed as Roman was in for the biopsy. Praying that he has NO cancer left in his bone marrow. We will know the results probably on Wed. afternoon...however, we should know the results of the aspirates they took (before they actually take the biopsy) tomorrow sometime. The aspirates are sometimes a good indicator as to what is found in the bone marrow. The pathologist looks at the aspirates and writes a report on what is seen under micrscope. The actual bone marrow biopsy is sent out of state to be looked at and checked for cancer, that is why it takes a couple of days for the actual results. And, finally, tomorrow, Roman has a vision exam at the Kentucky office. So, at least we have a break from the actual hospital. I will let all of you know...as soon as I know something. In the meantime, please keep praying for Roman to be cancer free in his bone marrow. This is a huge test result. Thanks to all of you for your support, your prayers and your love for Roman and our family. We would not be making it without all of you. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:)
To start off, we have no bone marrow results as of yet. We could maybe hear something tonight about the aspirates...if not, then we will hear tomorrow for sure. Today, Roman had an eye exam. His eye doc was very pleased to see that tumor shrink as it has and was also pleased that Roman's MIBG scan came back negative. I asked the doc, just because I am a curious Mommy, about what if Roman's eye needed radiation...he said, vision loss was a major concern for Roman, and cataracts and just vision impairments in general. So, thank you God for sparing Roman's vision!!! The doc also was pleased with Roman's focusing and eye movement. That was a major concern with the tumor being on the upper eye lid like it was. So, good news from the eye doc... HOORAY!!! Also, the doc asked me if it was ok to take a pic of Roman so he could show all his colleagues at the UC board of Opthomology...and I of course said absolutely. If Roman can be used for a learning tool for any doc to see how Roman's tumor took over his eye like it did, than so be it. I wanted the doc to use any and all info about Roman to help other families out there. So, tomorrow Roman has a hearing exam in the morning. His last exam went well, but they wanted to give him a change of atmosphere for this exam...so it will be at the Kentucky office just like today's eye exam. PLEASE keep praying for Roman's bone marrow biopsy to come back NEGATIVE...Mike and I are on pins and needles waiting for this test result. We feel our lives are just dangling right now waiting for this. We love all of you and can't thank you enough for ALL of the love you send us. The support is amazing! God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| September 21, 2007 Hello to our family, friends and new friends! Well, we are just completely and totally exhausted...this was a grueling week of not much sleep (everyone in our household) and not much food in our bellies (again, speaking for everyone in our household) and mentally and emotionally drained....mostly Mommy and Daddy but Sheridan took this week hard too. But, it is over, and we do get a much needed break this weekend. Roman had his GFR today for his kidney function. His Kidneys are doing just fine. The docs like the numbers to be at least 3 digits and Roman's was 188. That is better than expected. Roman does however, now have some sort of infection in his diaper area...the doc looked at it today, and gave us a script for some anti-fungal ointment. To me, it looks like a yeast infection and the poor thing has been itchy. Anyway, that was all the news from today...other than it was the longest day spent at the hospital...we were there ALL DAY!!! From 8:30 this morning to around 5:00 or so. So, needless to say, Mike and I are beat. We want to let everyone know that Roman's bone marrow biopsy is scheduled for around 10:30 or 11:00 am on Monday. We will not know results maybe until Wed sometime. We love all of you and thank you for your endless support and encouraging words and emails and phone calls and cards, etc. Mike and I read every single one of them and are keeping them for Roman and Sheridan. The support is overwhelming and we are blessed. Keep the prayers coming!!! Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 21, 2007 Hello to our family, friends and new friends! I know it's very early according to my standards...it is 5:03 AM!!! I can't sleep...imagine that!Anyway, we have to be out the door by 7:00 this morning for Roman's GFR (kidney function) test and then a clinic appt. this afternoon with Roman's bone marrow doc to answer anymore questions we might have about the bone marrow rescue process or any other concerns. I wanted to clear up some confusion that is out there regarding Roman's protocol (treatment plan). I have had many of you ask me thru email or phone cenversations about the flowing question: If Roman's bone marrow biopsy comes back negative (and we are praying it will) why then does he still have to do the Stem Cell Rescue because all the other scans were negative as well??? And, I want to clarify this with the most simple answer...WITHOUT the Stem Cell Rescue, Roman's chances for surivial decreases to a 20%...WITH the Rescue, his chances go up to 34% or 35%. I know those numbers still hit me in a very hard way...but Roman IS going to beat this. Every bone in my body and every faith that I can muster up...he is going to BEAT this BEAST!!! I hope that clears up some confusion on everyone's mind. And, before you ask me...the other side of the coin, the bone marrow coming back positive...I am not going to answer that for you. Because I do not want to go there with all of you...Roman's WILL come back negative. I am his Mommy, and I have to be the front runner of being positive for him, our family and for all of you. I will update later on today and let you know how the day went. Love, Thanks and God Bless Roman and ALL kids fighting cancer. Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 19, 2007 Hello to all our family, friends and new friends! Well, needless to say it has been an overwhelming day filled with fear, worry and wonder about the MIBG scan. Well, no need to worry and wonder anymore...IT CAME BACK NEGATIVE!!! Can Mike and I just tell you how the news hit us... we just instantly sobbed on the phone with Roman's doc (we did 3- way with Mike at his office). You can only imagine when we heard those words..."negative" how we felt. I can't even describe it for you other than it was hard for me to breathe! This great news means more than just great news...it means that Roman will not have to have radiation on his eye and we can put that tumor in its final resting place...GONE!!! The CAT Scans that were done yesterday came back negative as well. Mike and I have to tell all of you, this is hitting us like never before... to know that our whole world and our family unit was depending on this test result. Unfortunately, it is a two parter... Roman has to complete one more HUGE test this coming Monday... a Bone Marrow Biopsy. This of course will show us if it is still in Roman's bone marrow. We are hopeful and praying to GOD that it is negative as well. Speaking of praying, we want you all to know that Roman IS where he is because of you. Your support for our son and our family is more than we could ever imagine, it means the world to Mike and I knowing that Roman has ALL of you in his corner. This whole entire experience so far, has changed Mike and I. I have said it before, we do not look at life thru the same old eyes we had before April 25th. On that dreadful day, Mike and I got to look at life with new eyes wide open. MANY, MANY people NEVER get that opportunity. And, we did. We have changed, our family unit has changed, and our lives will NEVER go back to the way it was before April 25th. Some might look at that and think that sure, it will go back...but I am here to let you know...it won't EVER. And, for Mike and I, that is ok. As long as we have Roman and Sheridan, and a roof over our heads and food to eat, and great family and friends we are doing just fine:) Please, don't stop praying for Roman. It is working...whatever faith you are, whatever beliefs you have, wherever you go to chruch, just please don't stop praying for our Roman. We have an off day tomorrow so Roman gets a break and then on Friday, he has the kidney function testing called GFR. We love all of you and thank you from our hearts to yours:) God Bless Roman! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 18, 2007 Hello to our family, friends and new friends! We DEFINITELY had a much better today than yesterday. Of course, that might be due to the fact that it was only Monday yesterday when all that went down and they probably thought... we better make them happy because it's going to be a very long week with the Fariellos:) And, to our surprise today, everything went really well. Smooth. Roman's test results from yesterday are as follows...Echocardiogram was their words here "normal, above normal" which to us was good news. And, we don't have his his EKG results back yet, but, pretty sure his heart is doing just fine. And, his Bone Scan results were good as well. No new "cancer" areas were seen and as we already knew his eye has had significant reduction in tumor size. So, that is kinda the news we were expecting...the MIBG scan that takes place tomorrow, is a scan that is used for only Neuroblastoma patients. This scan will "glow" any "live hot spots" or where there still may be some cancer. So, getting the results from this scan, Mike and I will be a nervous wreck!!! We are hopeful and pray to God that Roman shows NOTHING on the MIBG scan. That would be are best case we could hope and pray for. I will update tomorrow evening hopefully about the CAT Scan results today of his head, chest, pelvis and tummy. Again, we are expecting to find NOTHING. Please, keep praying for Roman. So far, your prayers have helped out in more ways than we can count. We are very blessed and fortunate to have all of you in our lives. God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 17, 2007 Hello to our family, friends and new friends! Well, what can we say...other than it was another "TYPICAL" day spent at Cinti Childrens...from the heart echo, to the heart ekg, right down to the bone scan. What DIDN'T go wrong!!! The lack of communication in that hospital just totally amazes Mike and I. Before I go on a venting binge here, we have no results yet on both heart tests or on the bone scan. We will probably know something tomorrow. Anyway, where do I begin... Roman's appt time for the heart tests was at 9:30. We waited, and waited and waited...finally called him back at 10:35. Then, the tech who did Roman's echocardiogram, was a bit non-child friendly (to say the least). I felt she should not be working with kids. She was insisting that he "SIT STILL" for a blood pressure reading. I of course had to put my 2 cents in... by then Roman was obviously upset, and I told her "he is 2...your not going to get a good reading now anyway with him being that upset". So, that started our lovely day. We were late by then for the bone scan nuclear injection arriving over there after our appt. time of 11:30. When Mike signed us in, there were all of 6 other names signed in before Roman at the same time...It amazes Mike and I how they can get away with scheduling SOOOO many kids at one time in one place...that put us back until noon. Then, they took us to a room, injected him, then we had to wait 90 minutes for the nuclear meds to work. In the meantime, mind you all, Roman has had NOTHING to eat since last nights' snack and drank a couple sips of gatorade this morning until 9:30. After that, he had NOTHING. While waiting, we were told by a male nurse and our female nurse that the anesthesiologist was NOT ready for Roman and would not be until after 2:00 or 2:30. By this time, I was fuming but still calm. Then, our nurse came in and said that Roman would have to wait until 3:00 for his scan. Mind you, the nuclear meds are only good for a 3 hour window. I WENT OFF!!! I let it be known REAL fast that if we had to wait that long, WE would be leaving!!! I let them know my son waited long enough to eat or drink and we would be out the door...so, within a matter of minutes, magically appeared the doc and 2 nurses and the equipment for his scan. They gave him his "sleepy" meds and the test was started. I have to thank my Mom up in heaven... how I was today with Roman, was the same way she was with all 5 of us. Thank you Mom, for showing me that it's ok to speak my mind:) My advice to ALL of you weather it be for yourself or your kids...don't let them make decisions for you...YOU decide and WHEN!!! And don't take any "you know what" from anyone, anytime, anyplace. I begged God to give me strength this week and boy did He give it to me today:) I begged him to let me be Roman's voice when he can't speak. And, I was his voice today. NO-ONE, I mean NO-ONE will treat my son at that hospital like that ever again. Mike and I have walked out of there before, and we will do it again. Maybe other parents are more apt to just "give in" and take whatever comes there way...well, that's NOT Mike and I. That's not even all of it...his labs were an issue today, but I won't even go there with you over labs. We are so tired of Roman having to "suffer" for THEIR lack of communication and disfunction. So, on that note, I pray that tomorrow will be a better day for us. Unfortunately, our track record is not the very best at that hospital. Tomorrow, Roman has a CAT Scan of his head, chest, pelvis and abdomin and also he gets the nuclear injection for the MIBG Scan that will take place on Wed. We love all of you and thank you for letting me vent. I needed to let it out. I do feel better now. Love and God Bless!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| September 16, 2007 Hello to our family, friends and new friends! I wanted to share with everyone...the Rescue Roman Ride took place today. We did not have many riders, but the riders we did have, will literally remain in our hearts forever. I want to personally thank Mom and Dad Fariello, Aunt Jenn, Uncle Andy and Ian Fariello, Lauren "our angel", Mindy and Evie for the support you have given to us. And to the riders... Daryle and his friend... to Julie "General" and her husband Matt Rusk (we were so happy to see you guys) and to Mike's boss Kevin and his wife and son for riding. It was a small group, but none the less...a very important one. Mike got to ride in support of Roman. That was a huge deal for him. So, again, thanks to all of you for showing your support for Roman and our family. It means a great deal to us to know we are so loved.
I also wanted to let all of you know that tomorrow starts the rough week for all of us. Roman has an EKG and an echocardiogram on his heart at 9:30 and at 1:00, he has a Bone Scan. He will be under general for that scan. We are hoping and praying that NOTHING shows up on the scan. So, I will let you know about results as soon as I get them. I will update tomorrow evening about what tests and scans are on Tuesday. We love you all and please pray ALL Roman's tests this week come back with great news. God Bless! Jody, Mike, Sheridan and Roman:)
|
||
| September 11, 2007
Hello to our family, friends and new friends! I just wanted to share with all of you that Mike's boss, Kevin Benke, has offered a Harley for Mike to ride with everyone on Sunday. In case you do not know us very well, Mike loves to ride and sold his Harley a couple years ago because of having kids and being a busy daddy...the scarifices we make for our kids:) We want Kevin to know how much this means to Mike for him to make it possible for Mike to ride in support of his own son. Kevin, you are an awesome boss to Mike and we are so very grateful to you for your support. Now, this ride will truly mean something for Mike in support of Roman. We love Kevin for giving Mike this opportunity. So, we hope to see everyone who can ride be there in support of our son. God Bless all of you! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| September 11, 2007
Hello to our family, friends and new friends! Roman needed a blood transfusion on Thursday night... so we were at Childrens Hosp. until around 8:00. Then, Roman's doc called it right when he said that by Monday, Roman would need platelets. So, yesterday afternoon, we were at Childrens Hosp. getting platelets until around 6:30. Since getting both blood and platelets, we are hoping for an uneventful rest of the week. I wanted to let all of you know, in case you did not know, that that benefit ride for Roman was postponed until this coming Sunday, the 16th. Same place and same time. As long as nothing "eventful" happens with Roman, we, as a family, are planning to attend the benefit. We will meet outside in the parking lot of Rick's Tavern. We hope it is a great ride for all. And, people will get a chance to see Roman too. So, please spread the word about the ride on Sunday. And, I have GREAT NEWS about "our angel" Lauren. A couple of months ago, I nominated Lauren for the Cincinnati Enquirer's Hometown Hero column. And...she got chosen!!! How could she not be chosen for all she has done for us and continues to do for us. The writer of the column, Janet Wetzel, contacted me about Lauren. We did a very detailed phone interview and she did with Lauren as well. I do not know an exact date the story about "our angel" Lauren will be printed, but I can tell you that the column is only done on Mondays. So, I will keep all of you posted as to when it is in the newspaper. It is so exciting and makes Mike and I very happy to know that Lauren is getting the recognition she so well deserves. She knows how much she means to us... and of course to Roman and Sheridan; but we want the world to know!!! What she did for us this summer, and what she continues to do for our kids now, goes way beyond the title we gave her "our angel". She has definitely earned that title. We love her very much always and forever. Also, please continue to pray for Corey Nickell. He is doing much better since his stem cell rescue. The prayers are being answered. And, of course, please continue to pray for Roman. Next week begins the grueling week of all tests and scans starting on Monday. Thanks for all of your prayers and support. Love and God Bless! Jody, Mike, Sheridan and Roman Fariello:)
|
||
| September 7, 2007
Hello to our family, friends and new friends! OK...big... huge deep breath... here it goes... Sheridan had her ultrasound today on her abdomin. The results were NEGATIVE, nothing found in her belly!!! HOORAY!!!!!! Mike and I could not have been more relieved with that news. It will be one less huge thing to worry and always wonder about. One big huge weight that has been lifted off our shoulders. Sheridan is just fine. Now onto Roman...Mike and I met today with the bone marrow doc. We were with her for 2 hours. Mike and I asked her many many many questions, and she answered them all. From this meeting, I can tell you that she is extremely well educated in bone marrow transplants. And, I can assure you that after meeting with her, Roman WILL be in the very best of hands. From now on, I will call Roman's transplant, a Stem Cell Rescue with very high dose chemo. To clear up any confusion that may be out there regarding Roman...people always ask who the donor will be when we tell them he is having a bone marrow transplant. There is no donor needed, he is using his own stem cells. So, I will refer to it as Stem Cell Rescue, because that is exactly what it is. He is rescueing his own body, his own cells. He harvested his own stem cells after round 2 of chemo. I can get more into this with people if they have any further questions. It is confusing and I do not mind explaining things to anyone who wants to know more in detail about it. For now, that will have to do or I would be here for hours telling you about the process. Roman is scheduled to go to the hospital on October 9th for Stem Cell Rescue. He will have 4 days of very high dose chemo (I will talk about chemo drugs later on) then a 3 day rest period and then the actual rescue will take place the next day. Given there are not any complications that would arise. We are looking at about a month straight in the hospital. Maybe longer if there are complications. Before Roman gets to have stem cell rescue, he has to repeat ALL the tests and scans to see EXACTLY where Roman is before entering into stem cell rescue mode. I am not going to bombard all of you with the dates and times of scans and tests. I will however, on that day give an update as to what test or scan was done and how Roman did. I will let all of you know the results as soon as I know them. So, beginning Monday, September 17th, Roman has an EKG and an echocardiogram on his heart...and a bone scan with general anesthesia. It is ALOT of info for Mike and I to take in. I will do my very best to update all of you as best as I can in relaying info to everyone. It is needless to say, overwhelming. We are truly confident that Roman will handle this very high dose chemo just like he tackled the previous 6 rounds of chemo. He truly amazes Mike and I with his never ending energy, appetite, and willingness to be a trooper and go thru what he has had to endure. No child should ever go thru anything like Roman, or any other child fighting cancer. He WILL prevail...he WILL beat this...he WILL fight to win!!! And, Lauren (our angel) I know you will be reading this update. The kids had a blast with you today (as always). We just want you to know that we truly do love you for being there for our kids...you give us the freedom of knowing that our kids are well taken care of. When you and Joey have kids someday, you will truly understand, at great lengths, what you have done for Mike and I. We love you!!! God Bless to all of you!!! And as always, keep praying for our Roman. We need all prayers in the coming months ahead. Love, Jody, Mike, Sheridan and Roman Fariello:)
|
||
| September 4, 2007 Hello all! Just a quick hello to all of you and a few pics of Roman and Sheridan taken today. Today, was her first day of preschool...needless to say, I balled my eyes out after I dropped her off at school. I cannot believe she is in preschool already. I know it will be great for her and for her to have her own thing going on now. She NEEDS that so much for the upcoming months. The school has been so kind and generous to our family. Mike and I feel truly blessed by them. Roman continues to do fine. The home nurse came today to draw labs for Roman's counts. He did not like it when his "sissy" left without him today. But, "Derney" (grandma) was here with him so I could take Sheridan to school. I also wanted to let you know that Sheridan will be having an abdominal ultrasound done on this coming Friday morning. The reason being...Mike and I of course are worried about Sheridan being Roman's sissy with his diagnosis. Roman's doc and our pediatrician spoke last week about our concerns and they want to put our concern to rest about Sheridan. What parent would not be worried that their "healthy" child would not be affected as well. The docs are VERY confident they will find NOTHING. Both docs were on board to help ease our minds. So, on that note, I will let you know when we meet with the Bone Marrow Team and Docs...suppose to be Friday afternoon...we will see. Thanks for all your continued prayers and support. We could not and would not be making it thru this without all of you. God Bless!!! Jody, Mike, Sheridan and Roman Fariello |
||
| August 31, 2007 Hello to our family, friends and new friends! Well, Roman came home from the hospital tonight around 7:30. He is doing just fine. He was so very happy to see Sheridan and started playing with her right away:) They are so adorable together. They miss each other so much. It is so noticable when they are apart from one another. I do not know how we are going to manage the two of them not being able to see one another for the upcoming bone marrow transplant. Which brings me to update all of you ...Mike and I are suppose to be meeting and seeing the Bone Marrow doc and team next Friday, the 7th, to discuss EVERYTHING there is to know about the transplant process, drugs, side effects- both long term and short term, pain controlling, etc. So, as soon as I know more of what is dicussed, I will let you know. The week of September 17th, will be a grueling week of ALL repeated tests and scans on Roman. He will be "put under" literally everyday for every test and scan possible. They want to make sure he is healthy for transplant. After that, we wait for all the results and tests to come back. Then, Roman will tentively go in for transplant on Oct. 8th or 9th. His 2nd birthday is on the 7th, so at least he will be home for his birthday:) As I said before, I will let you know more when I know more. Until then, we are very happy Roman has conquered Round 6 chemo so well. And, I can't believe our little guy has completed 6 rounds of chemo in just 4 months!!! He is an amazing little boy!!! As I have told you all before, Roman will beat this, and win this...he is a fighter! We have to have faith and believe he will be cured of this horrible disease. We love all of you and thank you for all your continued support thru out this long exhausting process. God Bless!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 29, 2007 Hello to our family, friends and new friends! Just wanted to let you know that Roman has already been sick once thru the night. He has never done that before this early on with these chemo drugs. Just exactly 12 hours after chemo started. This is the round he "usually" handles things fairly well. Mike and I seem to think his anti nausea meds were not given to him on time and/or his body has just had ENOUGH of these horrible drugs and he is tired. This is round 6...who wouldn't be tired of these drugs by now!!! Please continue to pray that Roman getting sick was just a fluke and that he continues the rest of this round like he has the previous rounds. He is a trooper. He is strong. He is Roman Fariello!!! And, please pray that Mike has strength to work today, tomorrow and Thursday and Friday...he does not get any quality sleep up there with Roman at night, so please pray for Mike as well...Mike is an AWESOME DADDY!!! I am one of the luckiest women in the world to have a husband like Mike. Just pray for him:) Love, Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 28, 2007 Hello to our family, friends and new friends! Roman started round 6 chemo today around 3:15pm. He is a trooper!!! Hope and pray he does as well as he has with these previous chemo drugs. I also wanted to please have everyone pray for Corey Nickell...he is the son of Debra and Jim Nickell. Our families have gotten to be real close...they are family to us. Corey is struggling right now with his kidney function. He is not getting rid of the fluids they gave him to flush out his kidneys. The chemo drugs are so toxic to the kidneys. He is in ICU, on oxygen and very swollen. But he needs any and all prayers too so that his little body can handle the transplant that is supposed to be taking place sometime today. It is hard for me to report news like this. I have had MANY of you ask me how I can hear all this bad news around us with what is going on with Roman...I tell you this...all of us families who are struggling for our kids lives, know that nothing else matters in this world but our kids. No amount of money, bills, whatever, nothing compares to what we would do and what we have endured for our kids fighting cancer. We are in this bubble, and only a few families are chosen to be inside the bubble. If you are not in the bubble, consider yourself VERY lucky and blessed that you have healthy kids. If you are inside the bubble like Mike and I, and Debra and Jim, and Maureen with Jessica, and Dan and Audrey with Austin and Karen and Ed Carter who just lost Caroline, you need to know you are not alone in fighting this cancer. Someone else who walks in your shoes so to speak. That is why I am so involved with Corey, Jessica and Austin and Caroline Carter's family. Because we have all walked that unfortunate walk of Neuroblastoma Stage 4... and we, inside the bubble, are not alone. Thanks for all your prayers for us and ALL kids fighting right now for their lives. Love, Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 27, 2007 Hello to our family, friends and new friends! Well, Roman's line that was fixed is doing just fine. The home nurse came today to draw labs for tomorrow's chemo and the blood came out of it just fine. No problems to report:) So, we are currently scheduled for round 6 chemo tomorrow as a direct admit. Which means no visit to the clinic before the chemo starts. If all goes well, we should arrive by 9:00 am and get fluids going and start chemo soon after. We do however, have to call the 5th floor first to see if there are any beds available for Roman. Hopefully, since we are the first admit of the day, we won't have to wait for a bed to open up. This is the round where Roman usually handles things pretty well. The only thing is this is the round where he usually spikes a fever around 10 days post chemo. So, please continue to pray that Roman does as well as he has previously. And, a look ahead...we will be soon meeting with the Bone Marrow Transplant Team to start scheduling ALL of Roman's tests and scans before the actual Bone Marrow Transplant starts. I will keep everyone updated as I always do. And, exciting news about Sheridan...tomorrow at 1:00 pm, Mike and I will go with her to meet her new pre-school teacher and see the school. She is SOOOOOO excited!!! Love, Thanks and God Bless All of you, for we would not be doing as well as we have if it were not for all of your love and support and prayers. Keep them coming!!! Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 26, 2007 Hello to family, friends and new friends! Well, you are NEVER going to believe this when I tell you that we had to come home way too early from our so much needed get away!!! I am really numb right now and very raw with emotion, not to mention exhausted... so, here goes...Last night Mike was ready to put Roman in his twin bed at our chalet, and he felt something wet on Roman. I had just been up there to get his bed ready for 'night night's so I left on the kids night light. Mike could see something very dark colored...He IMMEDIATELY flew down 4 flights of stairs carrying Roman, and came running into the kitchen area "there's blood"!!! Sheridan was seeing all of this unfold right before her tiny eyes...Mike's tshirt and shorts were covered in blood and Roman's shirt was covered...we had no idea where it was coming from. Mike was in a panic mess being covered, and Sheridan was in tears with the most frightening look on her pretty face...A look we will never forget! And I, believe it or not, was calm with a quiet inner panic. I quickly turned to Sheridan and calmed her down...holding her face in my hands, telling her "Buddy's going to be alright", not even knowing if that was the case or not. I did what I did to protect her as any mother would do. I then shifted my attention on finding where all the blood was coming from. I lifted up Roman's shirt and saw that his Central Line, was well in tact. That was my biggest fear, that he had ripped out his C-line. I then focused on where there would be hole in one of his double lines(lumens). And, I found a tiny hole in one of them. So much blood from such a tiny hole. I quickly tore off one of Roman's clear tape covers for his C -line (tegaderm) and wrapped it around the tiny hole to stop it from bleeding further. Then, we called the oncologist on call in Cincinnati and Mike talked to him. He in so many words told us to be here by morning. So, we packed up EVERYTHING (we just unpacked) within a half hour or so. By this time it was 10:00 or 10:30 pm. Mike called his Mom to meet us at our house so she could be with Sheridan while we took Roman to the ER. We drove all night until 5:00am this morning and then took Roman to the hospital. A member form the Central Line Team came and checked out Roman's Line. And, it was fixable. THANK GOD!!! So, she fixed his line by cutting off the old one up to a certain point after the hole, then replacing it with a stent and some fancy clear glue that needs to set for 24 hours. And, she made sure that Roman had no clots in his line. That would be another bad issue to deal with. So, we have everything to be thankful for it not being way too serious. On the other hand, not so thankful...for the time we so desperately needed as a family, that could never be replaced and was taken from us. And, the most horrible part of all this... is Sheridan. She is the one who will remember "Buddy covered in blood" and "Mommy, why does Buddy keep bleeding all over???' Those, are comments that no parent should ever have to explain to their 4 year old. Mike and I cannot tell you how agonizing it was to tell her that we had to leave and come home. Words just do not express our sadness for her. She has seen and witnessed more in her young life than anyone ever should see or witness in any lifetime. All I can ask for now from all of you is your continued support for us... for Sheridan and for Roman. Since this happened, I am not sure what they will do about round 6 chemo, which is suppose to happen on this Tuesday. We are not sure what Roman's doc will do or say. It is right now, up in the air. I will as always keep everyone posted. I also want to thank all of you for letting me tell "my feelings"... "my story" as it is SO very real. Please keep on praying. Pray for us, and other families going thru this too. I do want to end this update on a high note...Roman did get to ride his very first "kiddie ride" with Sheridan. He of course loved it and we of course have it on video. Love, Thanks and God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 21, 2007 Hello to all our family, friends and new friends! Today, Roman had a Cat scan of his abdomen, pelvis and head with the orbits of the eyes. We just got a phone call with results...Roman has NO evidence of any tumors or anything else in his tummy or pelvic area:) And, with the orbits of his eyes (head) the scan showed significant reduction comparing from last Cat scan, and NO evidence of any new tumors/lesions in or around his orbits of the eyes:) The scan did show that Roman's right eye (where the tumor is) was growing NEW bone growth, which is what they wanted to see. Allow me to shout form the rooftops...MIKE AND I COULD NOT BE HAPPIER WITH THOSE KIND OF RESULTS!!! And, we could not be doing it without all of YOUR prayers and support. So, we can go on our trip this weekend as planned to Gatlinburg and have ourselves an absolute blast!!! Be a normal family and let the kids have so much fun...and Mike and I having fun SEEING them and enjoying them have fun. We will leave on Friday morning and come home Monday afternoon. Roman is scheduled for round 6 chemo on Tuesday the 28th. I will further update you on Monday when we get back home. We love all of you and thank you for praying for our Roman:) Love and Thanks! Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 12, 2007 Hello to all our family, friends and new friends! Today, around 2:00 p.m. this afternoon, Roman had a severe nose bleed. It lasted about 15 or 20 minutes. Roman soaked thru 2 wash cloths and the front of his onesie he was wearing. Enough to scare us, for fear it would not stop bleeding. It finally did. Roman's platelet count was low from Thursday's blood results...so we knew his platelets were even lower today. The platelets were low due to the most recent round of chemo. The Cisplatin and Etopiside tend to wipe out Roman's platelets and hemoglobin. So, on that note, we ended up at the ER about 5:00p.m. Roman got platelets and we were there until about 8:15 or so. He is now in bed sleeping sound and Sheridan is spending the night with Derney and Duppy. She was taken over there by Uncle Steve after he took her to Gold Star for dinner. So, she is probably sleeping like a "princess" since Derney bought Sheridan some new princess sheets and comforter set for "her" bed at their house. So, please pray that Roman getting platelets today will bring up his hemoglobin as well so he won't have to have a blood transfusion this week. I am still not sure when they will do the CAT scan. As soon as I know, I will let you know. Until then, keep praying for Roman as you have been and we thank you and love you for your support. Jody, Mike, Sheridan and Roman Fariello:) |
||
| August 4, 2007 Hello to all our family, friends and new friends! I wish I could start out my update on a high note, but, I can't. I am not going to make things sound like they are fine, when they are not. I am emotionally drained and exhausted. This 5th round of chemo, is by far the roughest round Roman has experienced. He is not eating much, or drinking much and he has puked more times than I can count. Whatever he puts in, comes right back out. He is just not himself and is sleepy alot. Mike and I, wish to God that we could take it all away from him. Seeing Roman like this, is not what any parent should see. I want everyone to please, continue to pray for him as he ends this round of chemo. He will get to come home tomorrow (Sunday) sometime. He will be on IV fluids to prevent him from getting dehydrated for 5 nights in a row. That means sleepless nights for Mike, Lauren and I. That means changing his diapers about every 1hour and a half or so. He will also be getting zofran (anti nausea) meds thru his IV. I hope I did not upset anyone with this update. I just wanted to share with all of you what we and Roman are dealing with. Mike and I were guilty of going on about our daily lives before all this began with Roman. It's so easy to be wrapped up in our own little worlds, we forget what is truly important and what matters. Mike and I do not want you to forget. Let us remind you to live each day to the best you can, and love your kids, tell them often and hug them more. That's what Mike and I want all of you to do for Roman... love life and your family. It can change in a second. Thanks for ALL your prayers and support. Roman needs them now to make it thru this next week of sickness. Love and God Bless Roman! Jody, Mike, Sheridan and Roman Fariello and Lauren "our angel":) |
||
| July 31, 2007 Hello to all our family, friends, and new friends! Just wanted to let all of you know that Roman finally made it to a room this evening around 7:00pm. We got there to start off our day with a hearing test. This was a routine test for this round of chemo. The Cisplatin chemo drug is very hard on the hearing. Roman did fairly well with little concern that he might have mild hearing loss or damage. However, they reminded us that he still has this round to go plus round 6 as well, that could possibly cause some hearing loss. But, as it stands now, he did fine. We will take whatever good news when we can. We had to wait in Clinic(like a triage room) until a room on the 5th floor became available. So, as we were waiting, Roman's eye doc came to see him and check him out agian. He was pleased with Roman's responses this time, but, still wanted us to patch the good eye when we can for up to 2 hours per day to make the bad eye work more effectively. Roman's oncologist, said he was very pleased with how well he is doing and how well Roman is keeping on schedule with all the rounds of chemo. We are only 1 week behind schedule...to give you a comparison, some kids are 2 to 3 months behind schedule for various reasons. So, please pray extra hard for Roman this round. Pray that he makes it thru and conquers it just like he has all the previous rounds. Where Roman is staying is A South 5 Room 47. Phone is 636-1547. We will likely be there until sometime on Sunday getting home in the late afternoon. We love all of you and thank you for all of your prayers and support!!! Jody, Mike, Sheridan and Roman Fariello and Lauren "our angel":) |
||
| July 29, 2007 Hello to all our family, friends and new friends! Today, we took Roman and Sheridan to the zoo. We went with Derney and Duppy(for those of you who do not know those nick names, that is Grandma and Grandpa Fariello), Aunt Jenn and Uncle Andy and baby cousin Ian. We had a great time. For us adults, it was very hot and humid and sticky. But for Sheridan and Roman, it was the best day to be just kids. Sheridan was soooo excited about seeing ALL the animals. Roman, liked the Cat House the best. We saw alot of animals and had great food. It felt very uplifting to have a "normal" day in our lives. We need as many of those as we can get. I wanted to let all of you know that Roman goes in for round 5 of chemo on this Tuesday, 31st at noon time. This is the "bad" round with the drugs Cisplatin and Etopiside. This was the round that was the hardest on Roman. Making him very sick and throwing up frequently. Hopefully, knowing what we know now, we can head some of that sickness off with IV anti nausea meds at home and IV fluids at home. Whatever it takes so we do not have to see Roman like that again. That was very rough seeing him feel that physically sick. This round is also a 4 day treatment. So, probably won't be coming home until late day on Saturday sometime. I will, as always, keep you informed on Roman and how things are going. We love all of you and thank you for keeping Roman and us in your daily prayers. We need ALL prayers to keep coming. And, we thank you for all of your support. It goes beyond what Mike and I could have ever imagined. God Bless all of you and God Bless Roman!!! Jody, Mike, Sheridan and Roman Fariello:) And Lauren "our angel" | ||
| July 26, 2007 Hello to all of our family, friends and new friends! Roman's fever finally broke thru the night last night. The results came back negative from the nasal aspirates they took yesterday. They were wanting to rule out a possible cold or sinus infection that may have caused the fever. If Roman can go all night tonight and all day tomorrow without a fever of any kind and his ANC comes back at around 200 or more, we may get to bring him home on Wed. sometime. His ANC today was still zero. He also got a blood transfusion and platelets yesterday. His coloring looked way better today and he was his normal playful self again. The chest ex-ray they took yesterday also came back negative looking for possible fluid on his lungs. So, Roman was released tonight from isolation status and Mike got to take him for a much needed walk out of that hospital room. They may never know what caused the fever. Mike and I are by no means doctors, but, we attribute the fever to just the chemo itself. On that note, we love all of you and thank all of you for your prayers and support. I will send another update when Roman gets to come home. For now, I am beat and running on empty. So, good night and God bless you and Roman:) Love, Jody, Mike, Sheridan, Roman and Lauren "our angel":) | ||
| July 24, 2007 Hello to all of our family, friends and new friends!!! We got to bring Roman home tonight!!! HOORAY!!! It only took me to literally scream at the attending oncologist and BITE his head off and a couple of the nurses up there,(nothing new with the Fariellos, we have a reputation at the hospital) but Roman is home:) It is a very long story and I do not want to go into detail for everyone. It is so NOT important to all of you. But, what is important is that Roman is home and feeling much better. We do have to take Roman back to the hospital on Thursday morning for a test called a GFR on his kidneys. They want to make sure Roman's kidneys are functioning properly before the next round of chemo begins. Which is scheduled to begin on July 31st. Next Tuesday already. So, in the meantime, we are planning to try to live a bit normal until next Tuesday. If the weather is dry and not too hot on Sunday, we want to take the kids to the zoo and let them be just brother and sister a while and enjoy being kids for once. No being away from each other, no docs, no nurses, no shots, no meds, no IV lines to get tangled, no puking, no fevers, no ANYTHING!!! Just a family wanting to be "normal" for a change like going to the zoo. We love all of you and keep praying for our Roman as you have. Thanks for your support and God Bless! Jody, Mike, Sheridan and Roman Fariello and "our angel" Lauren:) |
||
| July 22, 2007 Hello to everyone! I want to start by thanking all of you who attended the benefit Friday night. It was needless to say, overwhelming for Mike and I to see ALL the lanes being used up and people waiting to bowl and a line at the door. Then to see all of your faces, the people we love and who love us. I was a basket case just hugging all of you and knowing ALL of you were there to help our little man fight this disease. Roman cannot go wrong with all of you supporting him. It was very touching to see that he has touched so many lives. We, Mike and I, would like everyone to know just how amazing my best friend Anne and my sister in law Jenn are. Without the two of them busting their behinds off, the benefit would not have been a success like it was. They both are amazing women and we love them for what they have done for us and for Roman. Roman update: Today is Sunday the 22nd. The night of the bowling benefit, Roman stayed with my sister Coleen. He was not feeling very well. He was a bit feverish. Expected, because Roman is 10 to 11 days out of when the last round of chemo started. He was around 99.3. Yesterday, was Sheridan's 4th birthday, Roman slept while we celebrated with family on the deck. When Roman woke up, he was still feeling bla. At bedtime, his temp was 99.0. So, we put him to bed. Around 1:00am, I heard Roman coughing and went to check on him. I listened to him breath for a minute. He was breathing real heavy and out loud. Of course it scared the hell out of me. Mike got the thermometer and Roman was 103.3. So, by 1:15, Mike took Roman to the ER at Childrens and I was here with Sheridan. Mike just now called me and told me we were in finally in a room. They gave Roman some Tylenol and he will be getting antibiotics for 3 days to ward off whatever it is causing his infection. I will of course keep all of you updated. Just please, as you all have, keep praying for our Roman. We love all of you and Thank you for your support. God Bless! Jody, Mike, Sheridan and Roman Fariello:) |
||
| July 14, 2007 Hello to all of our friends and family and new friends!!! We came home from the hospital today with round 4 of chemo completed. Roman handled it like a trooper!!! He only got sick one time the night before last. He has been a bundle of energy since we came home today. He is so happy to be home. He took this round much better than the last round. However, because of the tumor and how it was drooping down into his upper eye lid, Dr. Motley, Roman's opthamalogist, wants him to wear a patch over the good eye until the next round of chemo. Reason being, it will force him to use ALL movements of the eye to help with quick responsiveness when looking at an object thru the docs prism lens. Roman has to wear the patch for 2 to 4 hours a day. So, hopefully this will correct any eye problems Roman will have in the future from the tumor. We hope to see all of you at the bowling benefit. We are going to see how Roman's counts are before we decide to let him come or not. If he does come, it will only be for a real quick visit. Mike and I just want all of you to get to see Roman and how he is doing. Please, if you have not done so yet, call Anne at the info line/or email Anne at info@rescueroman.org or email me to let me know an estimate number of people who are coming. We love you all and thank you so much for all your support and prayers!!! God Bless!!! Jody, Mike, Sheridan, Roman Fariello and Lauren:) |
||
| July 9, 2007 Hello to all of our friends and family and new friends !!! Roman's counts are ready to take round 4 of chemo. This round is a 3 day round. We have to have Roman there at 1:00 tomorrow (Tuesday July 10th). There is still some doubt about exactly where we will be. The fifth floor at the hospital is so crowded with cancer kids, there is not a bed available for Roman as of today. That is a thought for everyone to think about...that there is that many sick kids on that cancer floor of the hospital. Waaaaaaaaaaaay too many!!! Also wanted to let all of you know that Roman's very own website is up and running. It is RescueRoman.org My best friend Anne Allen's husband Jeff designed the site for us. He did an absolute wonderful job! We are just waiting for a high resolution cd of pics taken of Roman and Sheridan and our family by a photographer named Mikki Schaffner. She volunteered her services of digital photography for free after hearing about Roman on myspace.com thru Lauren. She took wonderful pics of all of us. Those were the pics that we want to use for the website. So people can see really great pics of Roman. As always, keep your prayers coming and please know we love all of you and appreciate all of your support. Thank you and God Bless! Jody, Mike, Sheridan, Roman Fariello and Lauren"our angel" |
||
| July 5, 2007 Hello to all our family and friends! I just wanted to inform all of you that Roman is still not ready for chemo. His body really took a "beating" with that last round. The docs told us with each round of chemo it will take Roman longer to come back and prepare for the next. Roman may be ready by Tuesday. So, on that note, we will enjoy another weekend at home with Roman and Sheridan. And, enjoy our time together as a family. I will, as always, keep all of you updated. Love and thanks for all your prayers and support!!! Jody, Mike, Sheridan, Roman Fariello and our "angel" Lauren |
||
| July 4, 2007 Hello to all of our family and friends!!! We wanted to inform all of you that Roman's story will be aired tonight at 5:00 or 6:00 evening news on Channel 5 with news anchor Emily Longnecker. She came this morning to do Roman's story about his disease and Lauren's story as well. It may be a 2 part story so watch and see!!! Please watch all of us we tell the tristate area about what our family is dealing with. We love all of you!!! Jody, Mike, Sheridan, Roman and Lauren our "angel" |
||
| July2, 2007 Hello everyone! Well, we thought Roman was going to be going in tomorrow for his 4th round of chemo...but, his ANC count, (the ablility to fight off infection) is not where they want it to be for chemo. So, they are putting off the chemo until maybe Friday or even Saturday... and that is only if there is a bed available. Roman is going in tomorrow morning at 8:30 for an echocardiogram to see if his heart is still functioning properly in order to handle the next round of chemo. On that note...I will keep everyone posted on what day we get to go in. We get to at least spend the 4th of July here at home with our family. Love and thanks for all your support and prayers!!! Jody, Mike, Sheridan, and Roman Fariello and our "angel" Lauren:) |
||
| June 28, 2007 Hello to all our family and friends!!! I just wanted to let you all know that Roman's account is finally set up to help us with hospital bills, home nurse care, meds, long term care etc. It is at any US Bank. The info you need to donate is Roman M. Fariello(just his name). That's how the bank finds the right donating account. And, to put a bug in everyone's ear, there is going to be a bowling benefit coming up real soon at Delfair Lanes in Delhi. And, Roman's actual website is just about done. I will let you know exactly when it is completed. 4th round of chemo is on July 3rd. Love, and prayers and thanks to all of you! The Fariellos... Jody, Mike, Sheridan and Roman... And, our "angel" Lauren:) |
||
| June 27, 2007 Hello to all of our family and friends! It has been quite a ride the past 2 weeks here at the Fariello household. Roman did get sick with the drug Cisplatin. More so than with the first 2 rounds of chemo. He needed to get platelets yesterday. This round wiped them out. He is doing good today and hopefully the rest of this week will be a "free" week from any tests, scans, surgeries, transfusions, trips to the hospital etc. Roman is doing what any other 20 month old would be doing. He just wants to play, eat, then play some more. He is a fighter. He is tough. He WILL win this, fight this, and beat this cancer. I want all of you to know that an account has been set up at Hoxworth in Roman's name. So, if you choose to donate, and would like to know you are helping a good cause, please let them know that you are donating in Roman Fariello's name. He should be in their system this afternoon. And that is at any Hoxworth center or even at a hoxworth bus in your area doing a blood drive. Just give them Roman's first and last name . And, on to some sad news. I would like all of you who have some time, to read a parents nightmare story of what her little girl is dealing with right now with her neuroblastoma cancer. She has the same thing Roman has. She has been fighting for about 3 years or so. The will and the fight in Caroline is going away. If you do read this, and I want all of you to try please, just put yourself in her mommy's shoes, and better yet, put yourself in my shoes and Mike's shoes. We have to get up everyday hoping and praying that the chemo is working for Roman. And, after reading Caroline's mommy's words, wake up everyday and live like it's the best and last day of our lives. We have to because of Roman and Sheridan and Caroline as well. So please, read her Mommy's words on her website. It is www.carolineacarter.com Roman's next round of chemo begins on july 3rd. I will keep you posted on how he does and is doing. We love all of you and thank you for your prayers and support. Jody, Mike, Sheridan and Roman Fariello:) Also, please continue to pray for Corey, Jessica, Austin, and Brandon. All of these kids have the same diagnosis as Roman. We all need your prayers. Thanks Again! And God Bless! |
||
| June 17, 2007 Hello to all of our family and friends! Just wanted to let all of you know that we did get to come home on Saturday early evening from the hospital. Roman did real well with round 3 of chemo...however...the delayed nausea has had Roman feeling real bla!!! He got sick twice in the hospital and once since we have been home. We can tell Roman is quite not himself this round of chemo. The drug, Cisplatin, is known for delayed nausea. And Roman definitely has it. Hopefully, he will feel alot better in the next day or two. Roman's doctor told us the average nausea lasts for about 5 days after this chemo. Roman was also sent home with orders for our home nurse to show Mike and I how to hook a bag of fluids into Roman's line. It was not hard at all. If we can give Roman shots in his poor little thigh, we can do ANYTHING!!! So, Roman is on IV fluids last night, tonight and Monday night. The fluids will run 10 hours each time. Of course, we run it at bedtime. And as always, he is a trooper. He is so happy to be home!!! Lauren has updated her Myspace.com/rescueroman page and has new videao as well. Please feel free to check it out. You don't need a myspace account to see her dedication page to Roman and see all of the hundreds of people around the country praying for our Roman. It is extremely overwhelming to read all of the entries from perfect strangers. I cry every time I get on. It moves me very deeply that all the prayers, support etc. is for our Roman and that he is the cause of such great Kindness and Empathy. The 4th round of chemo is scheduled for July 3rd. That is a 3 day course of chemo again like rounds 1 and 2 were. Please continue to keep Roman and all of us in your prayers. He keeps Mike and I going, for we have no other choice but to beat this cancer. Also, please say a prayer for all kids with cancer, for we have met so many families at the hospital who need prayers just like we do. We love everyone and God Bless all of you! Jody, Mike, Sheridan, Roman and Lauren our "angel" |
||
| June 11, 2007 Hello Everyone! We came home Friday night, Roman harvested enough for 5 bags of stem cells. He only needed 3 bags. So, he did real well. This week will be a tough one. Roman starts 3rd round of chemo on Tuesday. Just please pray that he gets thru this round as he had the previous 2 rounds. And, I wanted to tell you all that I met another mother and family who is going thru this nightmare like we are. Her name is Jessica Rose. Please, if you have time, go to her website and see this beautiful little girl who is fighting for her life just like Roman is. Website is...www.care4jessicarose.org We love all of you! Jody, Mike, Sheridan and Roman Fariello:) |
||
| June 7, 2007 Hello to all our family and friends!!! Roman went to the hospital this Tuesday for his blood harvest of stem cells and a bone marrow biopsy. The biopsy was taken from each hip side and a new temporary double lumen catheter put in the right side of his chest, opposite the other catheter already in place, by his armpit. He recovered well after surgery and thru the night. But by morning when they wanted to get the blood harvest started, they noticed a softball size hematoma(bruise) under the new catheter. They stopped the harvest before it even began. So, by last night, at 9:15p.m. Roman was in surgery again to remove the faulty catheter and replace it in the same surgical site with a brand new one. He slept well last night with much needed morphine. By 12:30pm today, they started the stem cell harvest. It ended at 4:00. They are anticipating to begin very early tomorrow to get more stem cells while Roman's counts are high. There is a very small window of opportunity to harvest before the next round of chemo. If all goes well, hopefully we will be home by Saturday to rest up for Tuesday's chemo. Again, we cannot convey to all of you how we love you and cherish all your loving thoughts and support. Keep on praying as you have... and, also, please keep in your prayers a family with a new diagnosis of neuroblastoma. Their child is a boy, age 5, with a large stomach mass. He will do chemo first then a surgery to reduce the mass to a smaller size to be able to be surgically removed. So, please, pray for him and his family as welll. Love you all! Jody, Mike, Sheridan and Roman:) |
||
