Post BMT day 260
+260
Tuesday we ended up tabling Tates neuro exam. She was still so exhausted and when we can set aside non priority appointments, we do! She slept all day. Until 6 pm. Pain is making nights and sleeping tough.
Wednesday was eyes. Previously Tate was being watched for a progressive eye disease and at last check had hemorrhaging in one of her eyes. The bleeding is resolved and they took the eye disease off the table. Still being watched for a silently progressive issue tgat can be caused by her cmv, but we are thankful!!! Best appointment we’ve had in awhile. Tate picked out some new glasses too.
Wednesday afternoon we got a together with Dave, Katey & Lizzy (baby Chloe’s parents) as they were in town. Tate has wanted to swim for almost two years! She got to do that with Lizzy. It was so nice to see the extra smiles. She was happily exhausted.
Last night we got back some unfavorable and perplexing labs that on first glance look like Tate’s body is creating antibodies again to fight against itself = autoimmune. We were told this was almost impossible so calls are out between rheumatology, immunology and BMT. This is honestly devastating and an autoimmune relapse for Tate. To get through transplant and believe that it would eradicate all autoimmune and to now confirm autoimmune presence with labs is truly disheartening. From a symptom standpoint, I’m not surprised as each day that passes, Tates pain and unfavorable symptoms seem to be increasing. But we don’t know yet what exactly we’re looking at, what it means, or what symptoms correlate with these new findings.
Please pray for Kody. He is currently admitted in New York for pain management and to support his lungs. He’s been receiving radiation to help manage the pain from his disease process. Ask Gid for a miracle to heal this sweet boy.