1 year + 15
11 year +15
Thank you for all the sweet Birthday wishes! Your continued love means the world.
This past week was filled with multiple days at the hospital for tests and appointments in addition to the regular PT/OT and therapies at home. Labs as per usual are causing some head scratching. Bone marrow biopsy and chimerism labs should be back by the end of this next week. These are the ones I’m anxious to have back and put to rest that her increased symptoms are not from a relapse or occurrence of any kind.
We had a long meeting on Thursday with Tates BMT Dr. He agrees with Tate’s primary specialist team that she is indeed inflamed. This is after hearing for the last 8 months that inflammation is impossible, so we’re making progress at least to a consensus which prayerfully leads to treatment. He doesn’t have a concrete answer as to where it’s coming from. He doesn’t actually believe the increasing pain is from inflammation and that we won’t see a decrease in her pain as the inflammation comes down. This would be devastating. I disagree with him and choose to be hopeful as labs directly correlated with her increasing symptoms. Her other specialists vary in opinion as to the source but have told me we won’t give up. Bottom line is that everyone does think there’s an autoimmune issue going on-not graft vs host disease. So….Tate lands back with rheumatology to treat something that we really did pray would be impossible after transplant. This is disheartening. We’re anxious to find a treatment to help Tate. She’s become dependent for help once again with pretty much everything that most of the rest of us take for granted. There’s been a lot of quiet mourning for all she’s lost again over the last several weeks.
After a particularly rough morning due to pain, Tate, Drew and I caught a softball game today with Tates Regis Softball girls. We had a little Birthday celebration and they always get easy smiles from her. Tate was also sung to by some of her BMT team upon waking from anesthesia on Thursday and given a sweet “16” cake. I think it’s safe to say, the Birthday celebrations are finished for this year. Tate was well loved. Thank you for loving her.