Wednesday, February 28, 2007


Not much to report, we have been spending most of our time at RMDH inside, away from the cold. I have been busy cleaning and sorting and rearranging the room, I think I have a case of cabin fever! Dylan has been busy now that home instruction has started again this week. He did some artwork this evening and also is spending a lot of time on the webkinz website which keeps him occupied for hours. He has a movie date with a friend this weekend so he is looking forward to going to the cinema, it seems like forever since he has been. We have been told that his hearing aids should arrive in about 2 weeks so that will be great. Dylan is eating really well and so far he is in his second week without needing any blood product transfusions. The team met today and discussed Dylan’s treatment plan. We will meet on Friday with Dr Modak, I think he is planning to start Dylan on Accutane for 6 cycles (2 weeks on, 2 weeks off). He does not want to start the TTC yet because of the risk of the Temodor component attacking his counts, he would like his counts to be at a more higher and stable position first.

What can you tell me about accutane?

Accutane is also known as isotretinoin, 13-cis-retinoic acid, and 13-cis-RA. It is related to vitamin A and is given by mouth. Accutane has minimal toxicities when used as a therapy for children with neuroblastoma. The most commonly described side effects include dry skin and mucous membranes. Some children experience peeling of their palms and soles.

Accutane stops the growth of neuroblastoma and can induce differentiation in vitro (in a test tube). A 5 year, randomized CCG study (CCG-3891) included 539 children with high-risk neuroblastoma. The study concluded that accutane improved the event-free survival for children with the disease and recommended that it should be used for treating all neuroblastomas in the future.

Resource from site:

The 5km walk for Dylan was a huge success, a huge thank you to Leanne and Jody and everyone else who made the day run smoothly. For photos click HERE