July 2, 2013
Hello to our family, friends and new friends!
This past weekend, Mike and I and the kiddos traveled to Chicago for the annual Neuroblastoma Conference that is held by cncfhope.org
We had a wonderful time there. It is always more than interesting to learn of all of the many different types of research going on to try to find a cure for NB. All of the speakers that attend the conference both days are the top of the top in Neuroblastoma. To have all of that info for 2 days right at your fingertips from the top docs around the country and world is a win for all NB parents and families. Pat Tallungan does such an amazing job putting this together each and every year. More NB families need to attend. It is well worth the trip, time and money. The foundation is in memory of her son who she lost to NB years ago. I can’t say enough wonderful things about it! If you are a fellow NB family, wherever you are on your journey, please consider going next year. Even if you are Angel parents as well. They have sessions for Angel parents going on at the same time as the conference. So there is something for everyone, no matter where your journey is.
I want to shout out a HUGE THANK YOU to not only Pat but to her helpers too. While we parents are in the conference, our kiddos are kept busy in the kid room with a lady in charge by the name of Kenna Anderson. She and her team of helpers keep kids busy with fun for up to 8 hrs both days. They do crafts, play in the bean pit, have a magician, a balloon artist, face painter, etc. They truly are “ANGELS” in my opinion and deserve way more recognition than I’m sure they get. I know they don’t do what they do to be recognized, but they deserve the best acknowledgements ever! Kenna’s own daughter battled NB years and years ago when there was nothing known much about the cancer. I just wanted them to know how truly amazing we think they are to do what they do each year for our kiddos, so parents like Mike and I can enjoy the conference. Beautiful people in my eyes!!!
One of the many perks going to the conference besides all of the latest info on treatments and trials is meeting fellow NB families. One of those families we met has an adorable daughter by the name of Baily. She is a cutie! Chad and Amy Ford are at the end of watching their daughter complete her last round of oral chemo this week. Baily had a post-transplant issue just like Roman did, called TMA. They also have a peanut allergy in common. Meeting the Ford family was definitely a perk. We will pray for Baily as she ends her...