Wednesday, September 6, 2006

High dose Chemotherapy is a bummer!

Dylan started round 13 chemotherapy yesterday. He was very brave and not nervous about it at all. First we saw the nurse practioner who went through the details with me. She told me Dylan would be having very high dose chemo starting with fluids to get his urine a certain ph level, followed by a 6 hour infusion of Cyclophosphamide, then 1 hour of Carboplantin, then 1 hour of Etopophos (VP-16). We went back to Dylan’s assigned bed, Dylan curled up and watched cartoons while I sat sinking into the chair, filled with a horrible feeling of fear, of how this chemo was going to effect him, something just told me it was too harsh. After an hour, Dr Modak called me to his consultation room. There he told me that he had spent the morning in conference with the rest of the Neuroblastoma team about Dylan and this chemo. He told me that they were concerned that this combination of chemo may do irreversible damage to his liver function. He explained that they didn’t really know how this combination would effect him because they have not given this combination before. He then told me that the other option would be chemo he has had in the past being, 6 hours of Cyclophosphamide, 1 hour Topotecan and a Vincristine push (Dylan had this combination after surgery last year). Dr Modak said that the team did not make a decision so he decided that the option was mine. I asked which combination will prevent a HAMA when he starts the 3F8 therapy and he replied that they both will, so with that I said that the decision is easy then, we go for the one that he has had before and has the least chance of destroying his liver. I explained to Dr Modak that my gut instincts were telling me that the original combination was wrong anyway, and he smiled and agreed. So Dylan had Cyclophosphamide, Topotecan and Vincristine yesterday. It was raining by time we left clinic at 7pm, so we hailed a cab, in which Dylan vomited on Tim’s t-shirt (Silly us forgot a bucket…should know better right!) Despite anti nausea medications of Vistrol, Aloxy and Adivan, Dylan continued with vomiting and nausea. When back at RMDH he really looked run down, very quiet and it was heart wrenching to see the dramatic change in him even after the first day. Dylan is also neutropenic already, yes even before we started the chemo his ANC was 0.8, so I cooked him pasta for dinner, which he attempted to eat, but an hour later it came up again. With such a low ANC, we are taking his temperature regularly and predicting that he will be inpatient by the weekend. Dylan had a good nights seep, I think the medications for nausea helped with that. This morning he was back at clinic for day 2 of a 6 hour Cyclophosphamide infusion and another 1 hour of Topotecan (no Vincristine today). Today Dylan had leg pain, likely due to the effects of the Vincristine push he had yesterday and he has not eaten all day, he is very flat, and vomited for the last hour of the infusion. The vomiting really does not upset Dylan, it is a horrible burning feeling that the chemo causes in his sinuses, Dylan calls this “fizzy nose” and unfortunately, there is nothing to relieve this feeling. On returning back to RMDH, he was very pale and went straight to sleep in his bed, he is on a home bag of fluids attached to a portable pump. The next 3 days up until Saturday will involve a 1 hour infusion of Topotecan, followed by a stem cell rescue on Tuesday as his counts will not recover on their own after this cycle. Dylan will then be eligible to start the “hot 3F8” study in 3 weeks, provided his ANC is at least 0.5 by then. After seeing Dylan so well for so long, this is very hard to deal with, Dylan went into this round with no fear but I think he had forgotten just how intense high dose chemotherapy actually is. Even though Dylan has had this chemo combination in the past, it was at a lower dosage than this round. Please keep Dylan in your prayers and thoughts, for courage and strength to come through this difficult period of treatment.

Tim arrived safely in New York on Monday night, seeing Dylan’s face as they reunited was priceless, he is just over the moon to have daddy back in his world, particularly during this time.