Sunday, September 8, 2013

Fun Enough

The marrow drive went really well last weekend.  (Here's a link to the local ABC news report about it that aired Sunday evening after the event.) Page from the National Marrow Donor Program called us to say that there were 72 new registries from the event -- and we're aware of a few more who weren't able to make it and are signing up individually on   (You have to be between 18 and 44 to sign up, but if you've done the cheek swab and are registered already you don't have to re-sign up -- they keep you in the system until age 61.)   Apparently, with all the new entries in the past 4 1/2 years, the Marrow Donor Registry has more than doubled in size, but still the odds of any individual in the registry being called is about 1 in 500.  Matching is still difficult, so every person in the registry improves the odds of someone getting a good match.

We have not yet found a match for Krista, but they're working on it.  It takes about 2-3 weeks for the new registrations to be processed and compared.  In the meantime, the City of Hope has contacted a couple of people who were already in the database and are potential matches that are still available.  There's at least one more stage of confirmation they have to go through before any of them can be considered "the donor". So it's definitely not a done deal yet... and there's one strange potential complication:  the ones they identified were specified according to the blood type Krista used to have, not what she currently has.  We're talking with the doctors trying to figure out if this is going to be a problem or not.  The kind of match they're looking for is a genetic HLA match, so it's not likely to have changed due to the transplant since HLA matching depends on tissue-type as defined by chromosome 6, not by blood type.  Still, we were instructed to provide a newer post-transplant sample for matching, so trying to verify that there hasn't been a error made.

We're not sure what exact criteria will be considered for finding the match this time.  Each facility has its own policies.  At UCLA, almost five years ago, we were told that the cord blood used matched 5 out of 6 antigens.  This level of matching is now being questioned by some who want to match 10 antigens or more.  We don't know where City of Hope stands on this yet.  But they are supposed to be excellent, doing the second-most number of stem-cell transplants annually.  (The facility that does the most is supposed to be a hospital in Seattle.)  From what we hear, City of Hope is more choosy than most when it comes to matching, and that is why they have their own in-house matching staff.

So now we wait, and life keeps going on while we wait.  Krista and I celebrated our 18th wedding anniversary on Labor day.  We had plans to go out to a nice dinner, but nausea and lack of energy made it better to skip it.  The nausea was a recurring theme this week, and that made another fun evening necessary to cancel also.  We had tickets to the Fun concert tonight (Saturday) that we had purchased months ago, and even with craigslist we hadn't been able to unload them until Friday when a friend bought them for her daughter.  That was perfect timing, as we had thought of going anyway -- maybe arriving late and leaving early -- but it turned out that Krista was having a rough night tonight and would not have been able to enjoy it as she would have wanted.  Instead, we played backgammon with her in bed.  How fun is that?

This process is never what we want or expect it to be, but it's amazing to see what God is doing with and through it.  Everyone has been so generous in continuing to bring meals Monday through Friday (thanks Verna, Carrie, Kim, Mitsuko, and Connie!), so many generously offered their help at the marrow drive, and we've even received some really great financial donations to help with that extra burden.  Thank you all so much -- and may you all be blessed as much as we are by your ongoing care!

Better the little that the righteous have
than the wealth of many wicked;
for the power of the wicked will be broken,
but the Lord upholds the righteous.
The blameless spend their days under the Lord’s care,
and their inheritance will endure forever.
In times of disaster they will not wither;
in days of famine they will enjoy plenty.

(Psalm 37:16-19)

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