Its been a very long day and we just got back into our room. Waylon DOES NOT have cancer in his spine or in his bone marrow, which is extremely good news. We are so grateful for these results and thank God for this victory. Dr. Sara contacted Memorial Sloan Kettering in New York to discuss a clinical that they have open which treats neuroblastoma in the brain. We dont know all of the details yet and probably wont until mid to late next week, but heres a little of what we do know. This trial consists of full brain radiation and tumor removal (removal is not a viable option for Waylon because of the location of the tumors), chemotherapy and antibody therapy delivered directly to the brain/spinal fluid. Its my understanding that the radiation and chemo will be done simultaneously and by doing so greater results are seen. This can be done locally in San Antonio which is a huge benefit as we will be keeping our family together. The last part of the trial is the antibody therapy which will be done at Sloan. Nothing about this is easy. In fact, there are huge risks involved with the potential for major side effects. There are a number of things that need to be worked out, with the primary being that after Sloan reviews Waylons MRI images, that he is accepted into the trial. When Chris asked point blank of Waylons life expectancy, Dr. Sara said that even with radiation and chemo, she would say historically 6 - 12 months. Sloan Ketterings antibody trial has given patients much longer survival rates. At this point, I dont know anymore specifics. What I do know is that I REFUSE TO GIVE UP HOPE. I WILL NOT accept that he only has 6 - 12 months. Waylon is the strongest, most hard headed, determined person I know and he WILL overcome the odds. I KNOW IN ALL MY HEART THAT HE WILL. I will post next week as we know more about his future treatment. Thank you so much for all of the prayers, the profile picture changes and the loving, kind and encouraging words. As you can imagine I have been inundated with personal messages, friend requests and comments. I am reading everything and will try to respond as I can. We all will fly back home tomorrow and will enjoy our time together. Love, Stacy and Chris
Posted on: Sat, 10 Jan 2015 02:35:30 +0000
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