I saw Dr Modak this evening. He said that Dylan’s HAMA test is even higher than before and that he doesn’t know what to say to me, he is so shocked that this has happened. He said we did everything prior to the therapy to prevent a HAMA occurring, we did high dose chemo and MIBG therapy followed by a stem cell rescue. Dylan’s counts are dropping further, now his ANC is 0.3 despite the continued GCSF injections to stimulate his white cells. Seeing how the other children on the study have ended up, Dr Modak said that he has little hope that Dylan’s counts will recover on there own and he anticipates we will have to use another stem cell rescue. So where to from here? Dr Modak said that he feels, that because we are going to use a stem cell rescue anyway, that he would like to do another round of high dose chemo to try and get rid of his HAMA to allow him to re-enter the hot 3F8 study. Dr Modak said he will meet with the team to decide what combination of chemo to give him, possibly one called ICE. He is hoping to start chemo as early as tomorrow. This of course is very scary for me, Dylan is already neutropenic and he will get very sick from this round of chemo. He also only has 2 stem cell rescues left in reserve, so if one rescue does not work we may end up using both, leaving us with a very grim situation for future therapies…but we will cross that bridge if we get to that point. If we start chemo tomorrow, he will likely have 5 days of treatment, then a stem cell rescue, which could take 2 or more weeks before his counts rise…meaning there is a very real possibility we will be in hospital for Christmas which kinda sucks. I told Dylan I was so sorry that he had to go through this again and he responded saying “I am not worried about the chemo mum, I just hate having more stem cells” The stems cells smell awful (like fish) and Dylan said he could taste it as it went in, he hated it. He is of course upset with the prospect of being in hospital for Christmas. I know Cain will also be unhappy with the situation, even though we are all so happy to be a family at this time and should be grateful for that, regardless of whether we are in hospital or not. So, yes, I am very stressed out right now. This whole therapy did not go as planned, at all. Dr Modak said that if the HAMA does not go away after this chemo, then we have to sit down and discuss what little options we have left and what options lay elsewhere as far as clinical trials go. I was hoping we would be well on the road to recovery by the beginning of 2007, but this is not going to be the case, instead we are running out of options and fast. I asked Dylan as I have done many times in the past…”please tell me if you want to stop treatment here and we will go home” Dylan looked at me and said “No mum, I want to stay here, I want to keep trying” I hugged him as tears steamed down my face, trying to wipe them away before he could see.
