Jackson's Journal

We received Jackson's most recent enzyme level and donor cell counts back this morning. It's confusing, but potentially really bad news.

His enzyme level is 0.1 . That is very very very very low, the lowest it's ever been except for when he was first diagnosed (it was 0 then). We are going to do a repeat level in the hopes that it's a lab error.

It's hard to say exactly what this means, and I'll do my best to explain why. Nobody knows what the threshold level is for the enzyme, what amount needs to be present in order to prevent myelin destruction and prevent his symptoms from progressing. Previously we had been told that the Duke team feels comfortable with an enzyme level above 0.5, but he's been below that for nearly a year now so we were taking a wait-and-see approach. His enzyme level was 0.3 at last test 3 months ago, and before that was 0.4 for probably the 9 months before that. So it has been dropping but slowly.

His donor cell count further complicates matters. The whole blood (overall) count was 11% donor cells, which is stable from the previous result. They fractionate the whole blood out to different kinds of white cells and do a donor cell count on those (they represent different things happening in the blood production) and those were both 7% which is quite a bit lower than previous tests, but it doesn't really make sense in light of the whole blood count so that may be an inaccurate level too. I don't know though, it seems like too many errors to happen at one time.

The bottom line here, in more understandable terms, is that this enzyme level could be indicating that the transplant is failing. If that's the case, the disease will start progressing again soon if it hasn't already. We could be looking at heading back to Duke for a second transplant in the very near future.

I am so scared. Please, please, please God let this be an error. Please let the enzyme level be higher on the retest. We should get the retest results on Friday.

Please send up a prayer or a good thought for Jackson, and for the rest of our family too. I know God will carry us through whatever is to come, but I am really nervous right now. I just feel sick inside thinking about going through it all over again.