A very nice weekend, a trip to San Francisco

As promised, here is an update.  The weekend was great.  We took the boys, along with Katie, for a paddlewheel boat (called "The Sternwheeler") ride in Cascade Locks and they loved it.  Some nice picture to follow.

Tonight we have returned from SF where we saw a few great docs at the Benioff Children's hospital.  The trip did not provide any epiphanies, but did yield new (to us) information and food for thought.  In short, the doctors there agree that Zevi meets the criteria for JMML.  Some more genetic testing will be conducted, but at this point it is all but superfluous.  The path forward, it seems, is with the bone marrow transplantation (HCT).

One mutation they are testing for is CBL, sometimes associated with JMML resolving itself.  In likelyhood Zev does not have that - and that is a good thing.  While CBL does indicate a chance of JMML going away, it comes, instead, with a plethora of other problems, both immediate and long term.  One of the physicians, essentially, told us that given the choice, we'd prefer taking our chances with JMML.  Enough said.

While the mechanics of the transplant are straightforward, the procedure before and after is anything but.  There are decisions to be made as to the choice of a location as well as the drug regimen.  Of course, this will be influenced by Zev's condition and our options for a donor.

The first news on the donor match front.  Neither good, nor bad.  The US-only search revealed 5 candidates with "10 out of 10" gene matches.  Several more with "9 out of 10".  To, be clear, this does not mean we have 5 good matches.  Each donor will be screened again, this time via a blood collection, to verify match and current health.  There is also one cord (one set of cord blood) in the US that has a "6 out of 6" genes matched.  Many more that are "5 out of 6".  At this point we will continue to wait for Benjamin's results, Rafi's results, and the results from the international registry search.  Should the results not improve, I am going to initiate a targeted donor drive.  Not at this point, not yet.  A few more days to know where we are.