We have had one roller coaster ride of a day! Dallas is having more intense episodes. We were informed he most likely will be treated for his condition elsewhere because even thou we are at John Hopkins this condition is still 1 in 10 million and they do not have protocol for infantile OMS. Then we are told the work up for the tumor search has to be complete before we begin plan of treatment. So ultra sound comes first today and we are told the tumor was found in the adrenal gland. With a heavy heart and devastation that we are now facing OMS and neuroblastoma a sense of awkward relief came over us, not because the battle was now double but that we have always knew we would find a tumor eventually, he presents the OMS so strongly that all the Drs believe its there. After absorbing the fact that we found it now lets fight it, they come in an say we are so sorry, but after looking on our high resolution machine we found that it is not a mass but fluid. Emotions ran rapid, I was relieved and devastated at the same time. So we will continue to search and pray that possibly he is tumor free and we only fight the OMS right now and monitor frequently for neuroblastoma, OMS is hard enough to manage itself. Hoping for a better tomorrow!!
Posted on: Fri, 26 Sep 2014 03:20:15 +0000
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