I saw Dr Modak this afternoon. He told me that they wanted to give Dylan a combination chemo of Carboplatin, VP16 and Ifosfamide. He explained that after a 5 day cycle, Dylan would have his stem cells back two days after that. The plan after chemo is to do radiation to the primary radiation site and lymph node site. After that??? Well, he is hoping the HAMA will go away by then, but is reserved in that happening. It’s amazing how a few weeks ago, Dylan’s treatment outlook was great, things seemed like, wow we could beat this thing, but know I am in a real slum. I have not lost hope, nor am I giving up. If getting extra time with Dylan is all I can achieve then we are doing it. We have already had an extra 2 years that we would not have gotten with him if we did not get to America. Dr Modak said there are a couple of things to discuss that we could do after radiation, and more trials may open, but he said this with little optimism, which upset me. Hot 3F8 is not totally ruled out, but of course that all depends on his HAMA going away, which we will test for regularly. I signed the consent forms for the chemo, I felt so confused. Later this evening I called Dr Modak to hold off tomorrows scheduled chemo, my gut instincts were just telling me to wait. I always tell people to follow their heart, and I think it was about time I heeded my own advice. I explained to Dr Modak that I wanted to double Dylan’s GCSF for one week and see if his counts rise enough to get us out of hospital. Dr Modak said that there is no disease progression, so there is no urgency to do the chemo and it will be fine to wait. He said that he doubted Dylan’s counts will hold and that a stem cell rescue will be inevitable. I accept that, but I at least want to try, and I want Dylan to be a little stronger to go through another round of chemo. The downside to the GCSF is that his platelets will fall dramatically and transfusions will be necessary at least twice a week or more. Dr Modak said that Dylan is already platelet transfusion dependant now anyway and that it is reasonable to take this option, but if his counts do not rise in a week, then we will have to use the stem cells and do the chemo prior. The chemo is a combination Dylan has never had before and 2 chemo drugs he has never tried, so Dr Modak said we should at least see if they do something, and if we are going to use the stem cells anyway, then we should take the opportunity to do the chemo too. That’s fine, I am ok with that, I just would like to get Dylan out of hospital and try and get his counts to a better state before we do this step. I feel confused and there are so many thoughts going through my head right now, lots of negative thoughts, but I am trying to turn them into positive ones. We will get through this, getting Dylan to NED may not be in sight anymore, but being with Dylan and having him happy and feeling good is my top priority, and who knows, miracles can happen.
Tim is still coming on Sunday evening, he will spend the night in Long Island with Cain to recover from the long flight, then come to the hospital to see Dylan and I. Dylan will jump out of his skin when he sees him, I have not told him that daddy is coming, so he will be very surprised to see him!
