Thursday, August 8, 2013 Everything changed in just a few minutes. The CT scan showed the area of concern has almost doubled from 16mm to 31mm (around 1.25 inches). This news was completely unexpected and has caught everyone by surprise. The only realistic answer is it is a relapse of his neuroblastoma. We are praying it is not, but now we have to assume the worst with the area increasing in size and the change in his demeanor. He has slipped back into his quiet and inactive state. Currently we are trying to understand this sudden change since he has done so well and all of his scans and tests were normal. In fact this recent bone marrow biopsy was clear on initial screen (we are still waiting on the specialized stains that should be back tomorrow). All of us felt the chemotherapy was removing the cancer, and he was on the launchpad for Atlanta. Just one week ago he was running around the hotel room with his sister while in Atlanta for his evaluation. I never would have imagined he would be so worn out and run down in this short time. The next step is to repeat the MIBG scan which is specific for neuroblastoma cells. It will take 4-5 days to get everything prepared and setup for the scan. Assuming this area is new growth of the neuroblastoma cells, it should “light up” on the scan as well as any other area in his body that would have active neuroblastoma cells. If it doesn’t show activity, it would be off to surgery to biopsy the area and find out what it is. This is certainly an unexpected change we were not prepared for at this time. He was doing so good and all signs and indicators pointed to him having a very good response to his chemotherapy and surgery. We are in shock now, but at the same time we are getting all of our information together and looking into all options. The next big thing is to get the results of the MIBG to confirm our fears and then be able to move forward with a treatment plan for him. Praying for miracles.
Posted on: Fri, 09 Aug 2013 00:09:30 +0000
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