[Shroob]

So things have taken a weird turn. We were under the impression we’d be getting my mom to Seattle in a few weeks after the initial visit (we were told once the board meets and the paperwork goes through we’d hear back) but never heard anything. We called, were told to call the next week, and the next…we kept being told there were no orders and they’d look into it. Finally we found out Dr. Deeg wanted to schedule a follow up in SEPTEMBER! We were shocked. After a bit of prodding we were told they are full and basically the other patients take precedent over her disease right now? He said “you’re not going to like this but the cancer patients take priority” and it’s just disheartening and confusing.
I guess she’s doing okay? More energy being off the Cyclosporine. She’s getting red blood and platelet transfusions every week, but has energy. Is only on Tacrolimus right now. Guess we’re just in a wait and see period. Kind of feeling like no one is really giving us answers. Obviously you can live with low levels but I also feel like this is a type of disease to treat sooner than later? I don’t know. Trying to get ahold of her hematologist but he’s gone radio silent and was probably hoping Seattle would take on her care from now on.