Alana Dung
September 25, 2002 7:21 PM   Subscribe

Alana Dung passed away quietly in her sleep at age 3 from leukemia, but not before inspiring 30,000 people in Hawai'i to register themselves with The National Bone Marrow Registry. Since her parents and brother were not marrow matches, her family made her battle public. To honor her memory, they eventually formed the Alana Dung Research Foundation, an organization dedicated "to support research efforts designed to improve the quality of life for children with serious illnesses." Her brief life also inspired a play. Is your marrow registered?
posted by Joey Michaels (17 comments total)
That's very smart they started this registry. I'd totally register, but, just like with blood donation, homos are out.
posted by RJ Reynolds at 7:30 PM on September 25, 2002

I know this is oh so very petty, but the Alana Dung Research Foundation is maybe not such a great name. Maybe among Hawaiians Dung is a common name, but here on the mainland it sounds like the foundation is researching Dung.
posted by Secret Life of Gravy at 7:42 PM on September 25, 2002

Yes, my blood type for marrow donation IS registered. I did it in the spring of 97. I have received one phone call from the National Bone Marrow Registry -- back in '99, I think -- telling me that I made the initial bone marrow match. The second step was to further type my blood into 8 subtypes. I think all 8 have to match. Anyway, I didn't match all that he needed. All I knew about the person who needed was that he had leukemia. For the two weeks I waited for the typing to come back, I surprised myself at exactly how much this person was going to mean to me. He was on my mind constantly. If you are like me and HATE giving money to charity, I would suggest doing this. Odds are you will never be chosen. But if you are, you will gain a brother/sister. And someone else will gain a life.
posted by mychai at 8:02 PM on September 25, 2002

Actually, mychai, I'm fairly sure there are 6 types, and only 5 of 6 need to match. I vaguely remember someone telling me that a 5 of 6 match may be better, because there is a fear that a perfect match would mean the patient would be equally susceptible to the cancer. Not sure tho, I'm sure someone who knows more about leukemia treatment could give more details.
posted by malphigian at 8:22 PM on September 25, 2002

I'm scared. I'll register, but the whole procedure if my marrow is needed really scares me. It's a painful procedure (from what I know from a friend who donated to her aunt) for both the donor and the receiver. That said, pain is better than death, all around.
posted by wolfgangnorton at 8:42 PM on September 25, 2002

I confess, my interest in this subject right now springs from the fact that I was identified as a preliminary match last Friday. I have been writing about is obsessively elsewhere. At first, I was lukewarm to the idea, until the lady at the National Bone Marrow Registry said the phrase, "there is this 42 year old lady..." Then it hit me like a ton of bricks: there is a real person out there that really needs this.

wolfgangnorton: I'm scared.

Me too. The pain is likened to falling straight on your behind while ice skating. However, now that I have this image of a specific person in my head, I am even more scared that I won't match. I'm glad I registered, even if it means I won't be able to sit down for a month.
posted by Joey Michaels at 9:30 PM on September 25, 2002

thanks for the reminder—i'm in dire need of an address update.
posted by brigita at 9:46 PM on September 25, 2002

definitely off topic, but joey, i think you're my hero. in eighth grade i had an inexplicable pain in my behind that lasted for about a month or so. i could never understand where it came from. however, your falling when ice skating analogy gave me insight to this long-wondered-about pain. it might have been from ice skating. i had never thought of that before. so anyway, i just want to say thank you for using that analogy.
more on topic, i would just like to say thank you again to you for posting this link. i am really into donating blood because that's something that i can do whether or not i have the monetary resources to donate. i am definitely going to investigate this further.
posted by zorrine at 10:06 PM on September 25, 2002

One important factor to consider is that minorities are underrepresented on the registry, making it doubly important to consider registering if you are in an ethnic minority. That story is from '97; at some point I remember a drive centered around a black girl who had no familial match and the point then was that whites were 5 to 10 times more likely to find a match on the registry. Hopefully, it's better today -- but still a problem.
posted by dhartung at 10:28 PM on September 25, 2002

South Asians are woefully underrepresented as well. I registered - I hope other South Asians do too.
posted by laz-e-boy at 10:39 PM on September 25, 2002

Joey: I have a friend who donated, he said it wasn't really all that painful (you're under general anaesthesia for the procedure, you go home the same day (usually) and they'll give you pain meds afterward anyway). You will be able to sit down, you'll probably just feel like you have a fairly minor backache for a few days (it's usually taken from your hipbones). Good for you for being willing to do this, you'll be back to normal in no time and you'll (hopefully) have made a huge difference to someone else.
posted by biscotti at 10:46 PM on September 25, 2002

I just hope she and I match!

Laz-e-boy and dharutng point out part of the challenge Alana's family faced. Not only was Alana an ethnic minority, she was of mixed ethnicity. As a result, the odds of finding a donor were astronomical - which makes it all the more amazing that they did find somebody.

The lady I spoke with at the registry pointed out another problem that they face when seeking donors: a surprisingly high number of people register and then back out. If you do choose to register, remember that you are making a commitment. If they call you, it is because somebody - some specific person - needs your help.
P.S. - Thanks, Biscotti. That relieves some of my anxiety!
posted by Joey Michaels at 11:30 PM on September 25, 2002

I was diagnosed with Acute Myelegenous Leukemia when I was twenty years old (I'm 33 now, in case you're curious). My first hospital stay included two weeks of chemo -- 24x7, wait a week to see if it worked, then 24x7 again. Plenty of side effects to go along with that. You're basically hoping that the body is strong enough to start producing healthy blood cells again. Mine didn't, at least not for 30 days or so. My only sister's marrow didn't match. The next closest match we could find was 5/6. My blood counts eventually came back, and we didn't need to do the BMT. I consider myself pretty fortunate that I didn't have to go through with the scary possibilities of graft vs. host (i.e. your body recognizes somebody else's marrow as a "foreign substance" and works to expel it).

I had another couple rounds of chemotherapy afterwards that eventually cemented my remission. Here's the interesting part, as it relates to this thread:

I donated bone marrow to myself. It's probably still in a freezer at Fred Hutchinson right now. The thought was that if I ever relapsed, we could give my own marrow (healthy at the time it was harvested) back.

As part of the various tests while you're getting treated for leukemia, you receive what is referred to as a "biopsy." Essentially a long, hollow needle inserted into the small of your back so the doctors can get a sample of your bone marrow. I had dozens of these within the first month of diagnosis. When you donate bone marrow, you'll be doing the same thing, only all at once. You're given anesthetic. I forget exactly how many extractions there were overall, but I want to say it was somewhere between 40 and 50.

Yes, the small of my back hurt like crap for a couple of days, but what better excuse to sit around on the couch, watching television for hours, having my family wait on me hand on foot?

Long post, I know, but this one touches pretty close. How many opportunities do you get to maybe save somebody's life? And all you have to do is lay on your stomach and let trained physicians poke you a bunch of times.

If you're still on the fence, take a look at this life mosaic.
posted by RKB at 4:33 AM on September 26, 2002

I'm registered. I registered years ago when my brother was diagnosed with leukemia. Unfortunately, I wasn't a match for him and the chemotherapy was not successful either. But if I get the call for someone else, I'm ready to donate.
posted by maurice at 6:16 AM on September 26, 2002

A friend and colleague of mine (self-link) is undergoing a bone marrow transplant this week. I know the wait for a suitable donor was excruciating for him and his family.
posted by timeistight at 8:56 AM on September 26, 2002

Timeistight and rkb: thank you so much for those links.
posted by Joey Michaels at 11:03 AM on September 26, 2002

Thanks - just went online and updated my address with the national marrow registry as I recently moved.
posted by qrs136 at 11:20 AM on September 26, 2002

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