Monday, December 15, 2008

Dylan never does things by halves!

More Drama! Dylan sure does do a good job when it comes to injuring himself, I think we are going to have to get him a permanent helmet! Last night in the playroom, he was dancing at a birthday party and fell over, hitting his head on the book shelf. He has a deep gash in the back of his head, but surprisingly he cried very little. Off to the Emergency room and they had to put in two metal staples to close the wound. Apart from this incident Dylan is doing fine. We spoke with the team at MSKCC and we have some decisions to make. We can put Dylan back on Accutane, the modest approach, just to continue to keep him stable until his HAMA goes away or the humanized antibody is available, or we can do the Nirfurtomox study in Vermont that may have some unpleasant side effects and involve more chemo, or we can take a chance on a new clinical trial at MSKCC that has minimal side effects, is taken orally, but has never been used on a Neuroblastoma patient before. It is called Perifosine targeting the IGF R1 receptors. This is an inhibitor that has proven successful with Neuroblastoma in animals, however it's effectiveness in humans with Neuroblastoma is unknown. The only side effects will be fatigue and diarrhea, 2 things that seem to always be an issue with Dylan anyway. We have decided that we will have a consultation in Vermont when we can reschedule a date in January and then make a decsion from there, once we have all our facts researched.

Dylan has a giving tree on the Lunch for life site again this year, you can access it HERE and here is the code when donating an ornament 31969, thank you for that Lisa.

I also want to mention igive for Band of Parents, please click HERE to see how you can help the cause just by shopping for things at stores like Bestbuy and Staples, there is no cost to you, just a few minutes of your time to register.