Greyson is our 7 year old ball of vivacious fun, giggles, and inspiration! We've followed him on his mysterious medical journey when it began in February of 2017, just as his second semester of Kindergarten kicked off. We noticed the corners of his eyes looked a bit yellow and immediately brought him in for testing. Over the next two weeks his health rapidly deteriorated and we watched him turn completely yellow with a severe episode of acute auto-immune hepatitis (negative for a wide array of infectious causes). He didn't respond to treatment with impossibly high levels of prednisone, and his levels of inflammation & immune dysregulation put him on the spectrum of HLH (a rare & life-threatening condition that can result in multi-organ failure).
Immunosuppression seemed to hold things in limbo, but he was not allowed to return to school or normal activities. No diagnosis seemed to fit his profile.... in the words of his doctors he was, "A Tough Nut to Crack." Finally, in April of 2017 he was re-admitted for a course of ATG, a form of immunosuppression typically used for organ rejection. His liver responded and began to heal.
By July of 2017 we were beginning to think we were out of the woods, but then Greyson's blood counts began to drop as he weaned off of the steroids. We were told that 5-10% of acute hepatitis also result in bone marrow failure. An even smaller percentage are resistant to treatment. They were not able to prevent his Aplastic Anemia/bone marrow failure from progressing, so our last resort is a bone marrow transplant, or to be specific, a matched, unrelated Hematopoietic Stem Cell Transplant. I will be journaling his experience here, as of March, 2018.