Slowly settling in

Another nice day today, Mina Brigitta is slowly settling in and feeling more normal. She's eating and drinking more every day and getting more color and more energy. She now periodically asks for "num-num" or "agua" or "juice". Some things are still a bit different, though. She still isn't eating much for breakfast, and the last few mornings after waking up she's been trying to push me off the bed, saying "dadda doo (down)". I'm still not quite sure what to make of it, other than that she doesn't want me to try to convince her to go back to sleep.

She's becoming much more talkative the last couple of weeks, too. Today she learned a new word: "Sissy". It's the first word that she can use to refer to herself, though she hasn't used it in a sentence yet. Also, Awais (father of her friend Emma) brought over and put together an "exersaucer" for Isaac on our living room floor. Mina Brigitta is very excited about it, she keeps saying "Emma dadda DIS!", and "bubba der" (pointing to it). Sometimes she combines the phrases, saying something like "bubba emma dadda der", meaning she wants brother to sit in the exersaucer. She's also recently learned "see" and "do", which are very useful verbs to know.

She has another lumbar puncture tomorrow, with a dose of prophylactic chemotherapy given in her spinal fluid. She's shown no evidence at all of cancer in her central nervous system, but they give these small doses every so often to prevent that. She has to be sedated for the procedure, which unfortunately means no food or drink until mid-afternoon when it's over. And then, she'll probably be somewhat nauseous from the chemo for a day or two. Good thing she was eating better today.

Then Keri and Isaac fly up to Seattle late tomorrow (Tuesday) night for a whirlwind tour of Children's Hospital and the Fred Hutchinson cancer research institute on Wednesday. UCSF is an excellent institution by reputation, but we aren't 100% happy with it. This is mostly because of bureaucracy, but we're also concerned that the staff isn't been perfectly consistent in exercising the caution required to care for severely immunocompromised patients. I think it's probably better in the BMT unit; in fact, we were housed back there most of the time last spring because they had extra rooms, and it wasn't until we were moved out that Mina Brigitta had her first serious fever. Fred Hutch pioneered BMTs and is still probably the world's leading institution, and we obviously have a lot of friends and family up there. It will be interesting to hear what they have to say, and to see Keri's impression of it. All else being equal, we'd probably prefer to stay here just because we wouldn't have to uproot the entire family. At the very least we'll get an expert second opinion on the 4/6 cord blood match and the conditioning regimen for the BMT.