Day +66: can it really be true?

Getting ready to go home tomorrow. Keri and Lyn spent all day in the apartment hanging pictures and cleaning. Keri said there is still quite a bit of work to be done tomorrow, but they won't exactly be releasing us first thing in the morning anyway. We'll probably wheel down the hall in the double stroller in the late afternoon after her nap. She'll be going home on Benjamin Seiple's birthday, and the day after Cousin Kennedy's birthday. Benjamin is the son of our friends Chris and Carol, who visited us here a few weeks ago, and he's been praying for Mina Brigitta and asking about her every day for a long time now, so it seems like the perfect day to go home.

Seems hard to believe the day is finally here. I hadn't let myself think about it at all until this weekend, when she finally seemed to me to be well enough. So much has happened since that Saturday when we drove her away from the house in Berkeley that she loved so much, just ahead of the movers. The walk that we took that morning at the "Aqua Park" will forever be etched into my memory. I knew then that we had some rough road ahead of us, but I had no idea just how rough it was going to be. I didn't even have time to fully appreciate just how rough it was at the time. Now, with some distance and perspective, I find myself looking back and I get a big pit in my stomach when I realize what she went through. The survival stats for Grade IV graft-vs.-host disease are dismal, maybe 10-20%. It didn't quite feel like that at the time, because it was so obvious that she was responding to the monoclonal antibody treatment. And those numbers are generally from before this treatment was available. Still, she had a very, very serious condition, and even the nurses here were bracing themselves for the worst. Thinking about it in those terms, and looking at where she is now, well, it's just pretty overwhelming.

As for Miss Mina, she's been better, but she's also been a whole lot worse. She's been kind of clingy and whiny these last few days, but that's been interspersed with bursts of energy and giggles. She ate a little better today, and she's been drinking really well, which is nice, even if the only thing she'll drink is green Gatorade. I worry a bit because I can tell there are still some issues, but that seems to be par for the course back here in the BMT unit. We did discover that she has a bacterial infection in her gut called "Clostridium Difficile", or "c. diff." (http://www.emedicine.com/med/topic3412.htm) This is very common among patients who have had lengthy antibiotic treatments, and Mina Brigitta has had it before. This is probably the explanation for the subtle gut symptoms she's been having the last few days. Any infection is serious, of course, but this one is relatively easy to get rid of and in any event is preferable to GVHD. She'll be on antibiotics for ten days at home.

We've been talking to her about going home for a few days now, and she understands she'll be leaving here and moving to a new environment. I think that's a bit scary for her. This room is something like a cocoon for her. I know she feels secure here, even though it's not always easy being here. Today she was so excited to go out and run around in the hallway, but the nurse came in at the last minute and said she wasn't allowed because her infection is contagious. She looked up at me, and big tears welled up in her eyes, and she cried and cried. It was so touching because it wasn't a whiny cry of "I didn't get what I want", but a sincere cry of deep disappointment and hurt. Well, my big girl, tomorrow you'll get to run around to your heart's delight. But I'm sorry to tell you your pole will have to stay here.