Tuesday, December 13, 2005
Christmas is around the corner
I cannot explain the excitement we are both feeling knowing that Tim and Cain will arrive here on Sunday. Dylan just seems to have a certain glow about him, he just cannot contain himself and keeps starting almost everything he says with “When daddy and Cain get here”. Dylan's cold is almost gone, he just has a cough left that you only hear a couple of times a day. At clinic yesterday we were put into a separate room, and we waited for his CBC results, ready to start treatment, but when the nurse came in she said his platelets have gone down to 44 and he cannot start treatment. His hemoglobin is fine and his ANC is fantastic but it’s those platelets that seem to be holding him back. I asked the nurse what will happen now and she replied that we will have to see what his counts are next Monday and that he can still remain on the trial but the Irinotecan dose will have to be reduced. She explained that over time of prolonged chemotherapy the counts can take longer to recover. I was worried about him going 3 weeks with no treatment but the nurse explained that Dylan is not symptomatic and his VMA and HVA urine markers have stabilized and remained the same since August, so there is no evidence of any disease progression at this point. In a way this break from hospital is great, but I am also getting impatient and want to get moving with treatment. We will try this trial again and scan on the 6th week to see if it has made any difference. If it hasn’t then I think we will try something else as there are a couple of trials available at the moment at MSKCC. I am also hoping the MIBG treatment will be available at MSKCC again, or even better will be if the hot 3F8’s are available then. The doctors are saying the hot 3F8’s should be available in the first trimester of 2006. The Ronald McDonald House is fantastic and at this time of year there is always so many activities organized. They have decorated the place so nice and we get a visit from Santa at least 3-4 times during the week! Over the weekend, Santa even turned up on the back of a Harley Davidson Motorcycle!