Saturday, February 2, 2013

now what?! (brought to you by tramadol)

I don't know if this is normal or not, but sitting around mostly immobile after this bone marrow procedure has me kind of obsessed over what happens next. I suppose it must be normal. I mean, for the past two weeks, I've been preparing for this extraction to happen. Now it's over, and poof! I have no idea of how Little Man is doing. And I'm not even allowed to know until three months in. Unless he doesn't make it. So I keep looking up survival rates for bone marrow transplants, and how HLH patients respond to BMTs, because I don't have anything else to do but sit here all jacked up on painkillers with ice on my back.

I keep finding all these resources about transplants and HLH, but don't want to post them on Facebook. I post enough crap on Facebook as it is, and I really don't want people interpreting it as some kind of pathetic attention grab because I did this good thing (I used to be friends with that girl, and she sucks).

So on the off-chance you're interested in information about bone marrow transplants or hemophagocytic lymphohistiocytosis (HLH, duh), I'm going to stick all of the really interesting stuff I find right here in this post.

Also, I have a clone. I repeat, I have a tiny person out there with my DNA who is my motherflipping clone. Whiskeytangofoxtrot.

Anyway, links:
HLH: A Simple Description - This whole Web site is an account of a little girl named Zoe's (winning!) battle against HLH (and we all know how much I love a Zoe).
The Histiocytosis Research Trust - "The prognosis for children with HLH has improved dramatically over the last 20 years and there is now a cure rate of more than 50%."
Thoughts One Year After Donating Bone Marrow Stem Cells - I had to have my bone marrow extracted directly from my pelvic bone, but other donors (like Ruth) are able to donate the stem cells that create bone marrow.
What Is It Like to Give? - From an awesome, now-defunct Web site called Sepia Mutiny. The site highlighted a few campaigns encouraging South Asians to register for the marrow registry; with only 1% of registry members of South Asian ancestry, South Asians have just a 1 in 20,000 chance of finding a match.

2 comments:

  1. Lol - a clone?

    I thought you said something about "little man". Last time I saw you in person -- admittedly long ago -- there was absolutely nothing of that sort about you in any way, shape, or form. So unless some horrible medical experiment went awry while you were under, I submit that there is no clone. DNA transfer, but no clone.

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  2. I know, I know. But "clone" just sounds so much fun!

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