Well I have good news and bad news, which do you want to hear first? Let’s start with the bad so we can at least finish this update with some good news. Dylan’s MIBG scan was scheduled for Wednesday but due to snow in Vancouver, the MIBG isotope necessary to do the scan was delayed, so the MIBG scan is now scheduled for this Saturday afternoon. Over last weekend, we went to Long Island for Saturday night, and the boys all had a lot of fun. By Sunday evening though, Dylan came up with lots of bruises, and the one on his arm was the worst I had ever seen, I also noticed tiny red dots all over his legs and arms known as Petechiae. I knew we had to go to urgent care for a platelet transfusion, so we packed up and jumped on the train back to Manhattan. We arrived at urgent care at about 9pm, and Dylan had a platelet count of 10 and to my surprise a hemoglobin count of just 6.7. This meant not only a platelet transfusion, but also a blood transfusion. I can normally tell if Dylan’s red blood cells are low and in need of a blood transfusion because he gets very tired, he sleeps a lot, looks pale and gets dark circles under his eyes. But for some reason Dylan did not display any of these symptoms, and was full of energy and his lips were very pink! They repeated the blood test just to be sure, and it came back at 6.8. We arrived back to RMDH at 5am Monday morning. I did Dylan’s urine collection on Monday, after a strict diet all day Sunday and during the day of the collection, to ensure that his diet does not affect the result. I saw Dr Modak on Tuesday morning after Dylan’s CT scan, he said all was good and we were all set for the next round of hot 3F8 next week, being admitted on Monday for therapy on Tuesday. The nurse explained that where Dylan’s bruises were could give a false reading on his MIBG scan so if I see new spots that correspond to his bruises, not to be concerned. That evening I got a call from Dr Modak, A wave of fear rushed through my body as he never calls this late just after a scan. I had those few seconds of terror to think that maybe the CT scan we had done that morning showed something was wrong. As Dr Modak spoke he told me there was a small problem, I paused waiting to get bad news, then he said...Dylan’s HAMA test was positive!!! How could this be??? Dr Modak said he was completely shocked, and he did not expect this. Dylan has never had 3F8 before, and was only given one days dose! Dr Modak said he has cancelled Monday’s admission and for us to come in next Tuesday for another HAMA blood test, in the hope the result was a false positive, meaning not accurate. HAMA is when the body recognizes that the 3F8 antibody is that of a mouse and not that of a human and rejects it. HAMA will go away, but it could take a week or many months and chemotherapy may be needed to try and get rid of the HAMA. I am wondering whether the Cetuximab trial Dylan was on has something to do with it as they were also mouse antibodies. I will discuss this theory with Dr Modak tomorrow when Dylan goes in for his MIBG injection and most likely more transfusions. We need to pray for a HAMA negative result for Tuesday so that Dylan can continue the trail, if not we will have to work out a new plan while we wait for the HAMA to go away. I will get the results from the HVA VMA (urine test), bone marrows and CT scan tomorrow, but will not get the results of the MIBG scan until sometime next week. I am in turmoil over the HAMA positive result but at the same time I am so grateful that the phone call was not over a bad CT result.
Now for the good news!!! Tim will be arriving in New York on December 10th and return to Australia with Cain on January 10th. A huge thank you to Mike Phillips and the management and staff of MPRE, not only for Tim’s airfare but also to Mike Phillips who organized and donated the first batch of fundraising wristbands for Dylan’s hospital expenses. They have also offered to help us to sell our house at no fee for their services. I also want to thank our mortgage lender for their consideration for allowing us the time to sell our home. Obviously the Christmas period is not the ideal time to put any house on the market, so being able to wait until late January will give us a lot better chance of finding a buyer.
