Fire Island

We had an amazing day at Fire Island yesterday. We left early with the rest of the RMDH families and took the bus to the ferry in Long Island to get to the Island. There are no cars on the island, except for the emergency departments, most locals use golf buggy’s or walk to get around. There were not even any roads so to speak, more like large sidewalks. When we arrived to the island, the local fire department picked us up in 2 pick up trucks and a van. They took us to a lady’s house called Barbara who generously opens her home to the families of RMDH once a year, she has been doing this for the past 15 years! We set up on the beautiful beach and used her home to cook a BBQ and for the children to rest if they needed to, but not Dylan, he was go go go all day long. I made sure he was well sun-screened regularly and wore sun smart clothes all day, along with the rest of the parents who came along who also have their children on Accutane. It worked fine, Dylan did not even look pink today, but me on the other hand who foolishly attempted to get a tan, came back looking like a lobster! Actually it was embarrassed smiles by the parents all round today, nearly all emerged looking very red and burned, yet all the kids were fine! I think we just forget about ourselves a bit and focus so much on making sure the kids were protected. Dylan had a great time chasing waves and flying a kite for the first time. We also saw many horseshoe crabs, these amazing creatures were around long before even the dinosaurs! I have never seen one before, I guess we don’t have them in Australia. Dylan just ran around playing all day, making sand castles, playing ball and just being a normal kid. We left at about 5:30pm and of course we slept most of the way back to Manhattan. Photos of the day can be viewed HERE

Dylan had clinic on Wednesday last week and needed both a blood and platelet transfusion, but his white blood cells and neutrophils were ok. We were actually scheduled for Thursday but a bruise on Dylan’s arm indicated that his platelets were dropping. Since then he has been fine. He is half way through his 3^rdcycle of Accutane and so far he has had no break down in his skin or lips, his only side effect is a slight headache and some joint pain. Tomorrow we will check into clinic and see were his counts are at.

Dr Cheung is having a meeting with parents here at RMDH on Wednesday night. This is not a usual occurrence so he must be pretty excited about the 8H9 clinical trial. Dr Cheung is the head of the Neuroblastoma Team at MSKCC and he spends 99.9% of his time in the laboratory making new discoveries in Neuroblastoma research. Since I have been here (2 1/2 years) I have only ever had one consultation with him, the rest of the time you occasionally see him flashing by through the pediatric floor. The 8H9 is the 3F8 therapy that has been very successful with Neuroblastoma in the brain, it is actually injected directly into the brain. Recently from what I understand, he has just discovered a way to deliver the 8H9 to children with relapse Neuroblastoma in other areas apart from the brain. Nick is currently the first patient on the study and I will learn more about it after Wednesday’s conference. I have also heard that parents are flying in just for the occasion!