1 year + 6 days
1 year + 6 days
It’s Mosaic Trisomy 8 Awareness Day! The extra chromosome that started it all for Tate…..
She’s paved her own path from the beginning. Even with the MT8. This weeks appointments brought more questions. More opinions and more anxiety as it feels like pre transplant dejavu.
An appointment with hematology Monday morning had me feeling hopeful. Dr. Nakano (sloth costume) has been a gift from day one. He’s brilliant and kind. His team is also amazing. Nobody has done more research on Tate and her situation than him. The news wasn’t a surprise based on symptoms but he thinks Tates lupus-esque disease is either back or more likely was just sleeping and now is awake. Makes me sad but I’m always grateful for a plan. A Care conference was suggested with Tates non BmT key players. This brought me hope. Tate has the best specialists who truly love and care for her and our family. So grateful for them all. Tate also needed a blood transfusion. During that, her BMT Dr. came in with his own lab requests and variants of opinion. Its hard to be the “like nobody else” kid. Transplant did a lot of good things, namely Tate is still here. But there’s lots going on too complex for FB. So we’re back to coordinating providers, working through varying opinions and trying to get people on the same page in order to receive treatment. All while Tate lives day in and out with so much pain. A continual slow motion emergency.
Coming up….Always lots of appointments and therapies, but in addition, full body MRI Fri, Echo, pulmonary function, bone scan on Tuesday and Bone marrow biopsy on Thursday. We are praying for full direction after next week.