Bugger, we are in hospital again! Dylan has had loose motions since Monday but we had them under controlled with Imodium. I thought it was due to his body recovering from the last round of chemo and surgery. I also assumed that his body may be adjusting to the food in New York as it is a bit different than in Australia and also his G-Tube feed is different. On Wednesday the doctors took a stool sample and said to come back if it got any worse. Well last night it was like water and the Imodium did nothing at all. The more I fed him through his G-tube, the more came out the other end. His stomach made awful sounds and he complained of cramps. This morning I brought him to hospital first thing and they decided to admit him for TPN (IV feeds) which means MSKCC will now be our home for the next week or two, again. They want his G-tube feeds to cease until he gets over this issue. Another stool sample was taken and blood was taken in preparation for TPN. The blood tests also revealed that his hemoglobin had dropped to 78, so he is now in the middle of a blood transfusion. He is so flat at the moment, it's awful, in fact he still has not woken up and it’s nearly 4pm! I am worried about the drop in his blood but the doctor said that it could be due to some blood loss in the diarrhea. He is also dehydrated, so he is on IV fluids. They have started him on Zantac for any ulceration bleeding and Flagyl antibiotics in case of a bowel infection. The stool test results will take a few days to come back before we can confirm an infection. We had just gotten use to life back at RMH, and now we are already back in hospital! I am glad that we had a great week of freedom though, and we saw and did plenty of things. I just hope that when Tim and Cain get here, we get some out of hospital time, trying to time it all around hospitalizations is almost impossible.
When we saw Dr Modak on Wednesday, he explained that the last round of chemo (Cyclo/Topo) had done little to reduce the Neuroblastoma in his bones and that it was not viable to do a second round of the same chemo as it would most likely have little effect and it messed up his platelets too much. So Dr Modak explained that Dylan’s bone disease may be resilient to chemotherapy, but that he has two more chemotherapy agents he would like to try before we start on MIBG, arsenic and radiation treatments. Monday Dylan will have a 5 day round of Irinotecan (IV) and Temozolomide (Oral). This chemo should not drop his counts as badly so hopefully Dylan will not become neutropenic. The down side is that it will cause diarrhea (just what we don’t need!!!). If this is unsuccessful, then we will have another round of a different chemo. Dr Modak said that MIBG will have a 40 percent chance of working in Dylan's case, and that although the last round of chemo was disappointing, it was certainly no reason not to continue with other treatments. I asked Dr Modak if he had seen other children in Dylan’s situation recover and Dr Modak said yes, that now with the treatments available, he has seen children like Dylan make it. I also asked if the tumor in his stomach would come back and he said that after the successful surgery that Dylan had, it would be unlikely for a tumor to reappear in his abdomen, but that it would be possible for Neuroblastoma to appear in the liver or lungs down the track, if we did get on top of the bone disease.
The problem is that 3F8 antibodies will need to be delayed even longer until we can reduce more of the bone disease. This of course means a longer stay in the U.S and more money! But I am trying to focus on one day at a time and to face each new hurdle as they arise. If the money starts to become an issue then I will face it when the time comes. The time away from home in Australia will be a separate struggle, and one that cannot be made better. But like I said, one day at a time, some days will be, one hour at a time.
Carolyn - A great story of a little girl who has won her battle against Neuroblastoma. Treatment was at MSKCC, the current entry has good info on Neuroblastoma statistics and funding.
I have added a photo of Dylan having a MIBG scan in the "view photos"
A big thank you to Lynn Walker and family, your gifts are lovely and Dylan was very pleased to receive the Mark Webber cap and photos.