Posted on CaringBridge today: Waylons scan came back: he is stable and his bone marrow is still negative. His neuroblastoma urine markers are improved with his HVA at 17 and VMA at 16. Normal range for HVA is 0-22, so this is in the normal range and the VMA range is 0-13, so this is just slightly elevated. I had really hoped this would be my post shouting out from the rooftops that Waylon no longer has cancer, so while this is wonderful news that there is no progression and he is stable, I am disappointed. I am so thankful that Waylon is so active and happy and that a stranger would have no idea he has cancer, but its been 2 years and 2 months and all I want, more than anything else in the world, is for him to be 100% healthy again. Each time durning scan week, I get anxious and nervous; its only natural, but as more time passes, my anxiety levels have increased. Last week, Waylon tripped/fell down 3 times one day. Normally I wouldnt think anything of it, because hes very clumsy and its not uncommon for him to fall, but this time my mind started thinking the worst. I couldnt sleep and all I could do was to try to contain my irrational thoughts and fears. I was relieved to know that there was no progression! Friday we were supposed to meet with Dr. Sugalski and a genetics counselor to go over the results of the genetic testing done on Waylons tumor by Foundation One, but the meeting was canceled because of the bad weather. Dr. Sugalski did briefly go over the findings. Foundation One specializes in genomic profiling to see if there are any specific gene mutations that would potentially benefit from targeted therapies. There were only genes they noted. One was the BRCA2 gene, but they said there is no known significance to this finding and that it is more than likely an abnormality in the testing. The 2nd finding was the CYCLIN D gene has a mutation which could potentially benefit from targeted therapy. We will be meeting with the genetics counselor at some point but niether of these findings are crucial in determining how we proceed with his treatment. We go to Ft. Worth on Tuesday, February 4 to meet with Dr. Granger to discuss antibody therapy. The clinical trial that he will participate in is Monoclonal Antibody CH14.18 with Lenalidomide +/- Accutane. We know this is what Waylon will do next, but I still want to discuss all the potential side effects of this treatment and I want to know and understand all of the benefits of doing this. Ive talked to other families whose children have done antibody therapy and I know that it can be very painful, but I also know that this can teach Waylons body how to recognize and fight off neuroblastoma. Its such an overwhelming feeling to know that the treatment your son is about to begin can cause pain. We have been so fortunate that through all of this, Waylon has had minimal issues and has tolerated everything remarkably well. I pray that we have the same results for this next phase. I am unsure how many cycles of the antibody therapy he will undergo, but typically its 6 cycles with each cycle being 28 days. Ive read over the protocol and it looks like he will be inpatient on day 8 for about 5-6 days and then again around day 20 (at least thats how it was explained to me). After our meeting next week when we have a better understanding of everything and when the new treatment will start, I will post another update. Love, Stacy, Chris, Morgan and Waylon
Posted on: Thu, 30 Jan 2014 17:37:08 +0000
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