That little "blip" we had last week where Kinsey's zero neutrophils (the white cells that fight bacterial infection, etc.) came up to 100 was back today. No real surprises on the numbers otherwise. That number should be 30-40,000 or so I believe and the Doc would be pleased right now to see it at 2000 or so, but hey, anything beats zero. Kinsey's platelets were 14,000, a pretty scary level, but they talked to us and said if we agreed to bring her home and keep her calm and somewhat still the rest of the day to avoid a bleed (lots of videos he suggested) they would wait until tomorrow to transfuse. The positives about this are 1) that we will be more likely to make it through the weekend without another ER visit 2) the fewer transfusions the better and 3) they are working on the HLA matched donor and while she still may not have that by tomorrow, she definitely wouldn't have had it by today. We will be back by 9:00 tomorrow morning. They assured us they would have us out in time for Kinsey's TV interview at 1:00. She is still very excited about that.
We actually stopped at the video store on the way home and as no one was in the store, we let her go in with a mask on and select a few. We've seen The Last Unicorn and Return to Oz so far. Aunt Ann bought her Willow which she's watching now. She even picked a Barney one out for Jillian and brought her a sucker (such a nice big sister). While Kinsey had a rare peaceful feverless night last night, Jillian was up about every hour. Kinsey was running a low grade fever again this morning and Jillian's is still high. We're thinking Jillian's will be gone by tomorrow and praying Kinsey's will. Her blood pressure is pretty high (a typical side effect of one of the drugs), but the doctors are not concerned enough yet to do more meds.
The only part about the hospital that Kinsey likes at all, and she likes it a lot, are the visits from the teacher. And even though Ms. Kim is supposed to visit her in the clinic, it never seems to work out. The timing is always off and the same for the psychiatrist (her second favorite hospital person). I am thinking this summer we could try to set up a 2-3 day a week schedule where someone would work with her at home. It could be one of us, but that doesn't have the same level of significance in her eyes. It's not real school. Not sure what resources there are out there for such a thing. Let me know if you have any ideas.
Audrey and I read all about bone marrow transplants today while Kinsey slept during part of our three hour clinic visit. The doctor says if the numbers have not improved significantly in three more months, we will be looking at that option. We both got so frightened and physically ill by what we were reading we had to put it aside. The idea that even if it works (unlikely without a matched sibling) the preparation (chemo and radiation) can have major, serious lifetime effects, sterility, stunted growth, lack of sexual maturation. The books we were given were several years old and I keep hoping things have changed in this regard with the advances in medical technology. If I find out they have, I will suggest to the caseworker they throw them all away. If they are correct, and if it comes to that, I just keep thinking we (and she) can deal with any or all of it if necessary. Anything but....
More numbers Monday. Keep praying. Thanks!
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