Tuesday, June 21, 2011

The update, part 1 & 2

The update, attempt two.

As in any college paper that you lose mid way through because something crashes, this isn’t going to be as thorough as it was the first time (this is a pain I know well!)

Last week when we went down to Cincinnati, Micah needed another IVIG (immune related) infusion. His numbers dropped (ideally, at least 400, they’ll accept 350 given the circumstances) from 500 after his last one to 300 in about a month. The infusion is about 4 hours, which makes a bummer of a day.

The jury is still out on the rapamycin. It did its first task well, in about a month. It’s immune suppressing, specifically related to viral infections and pneumonia. Coincidence or not, he’s been sick 3 times since starting the medicine two months ago. With the high risk, even a cold means a trip to the pediatrician, a chest x ray at the hospital, and a round of antibiotics. YUCK! The medicine can have a secondary effect in some cases of reducing the size of the mass. Key word, sometimes. It also can take 6 months plus to see this. We're left to decide whether it's worth it. It'll never replace surgery, I'm sure but could delay it, or at least maybe part of the surgery.

Oh, baby is up. That was two parts of 5 that I had written. It’s a start.

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