Monday, December 6, 2004

Refractory neuroblastoma -less than 10% chance of survival

I rang Dr Heath today and asked him if Dylan was his son, would he take him to New York for treatment? His response was that he worked in Sloan Kettering hospital for a few years, and yes it is a fantastic hospital but that he would not take Dylan there yet. He said that we can have the exact same treatment here that they do there at this stage. I asked if the surgeons here were as good as Dr LaQuaglia and he said that the surgeons here are good but Dr LaQuaglia is the best in the world. He said that we would need to get Dylan through some more treatment first before New York would even consider surgery and that if I wanted to take Dylan there for surgery we can but at an enormous financial cost. He said he will start the process of preparing Dylan’s history for Sloan Kettering as they like results and scans in a certain way and that it would take time, so he will start now. The results of Dylan’s bone marrow aspirate last week are as we expected…NB is still present in his bone marrow. Dylan is now officially classed as refractory and has less than 10hance of recovery. We will see Dr Heath on Thursday to discuss the next stage of treatment involving Topotecan, which I assume is still in a clinical trail phase. We also need to discuss when Dylan should take his “Make a Wish” trip to Queensland as we are concerned about missing the chance while he is well, but at the same time do not want to go at the expense of his health and treatment. I have added the weekend’s events today, so please take the time to go into the journal history to view the entries.