Krissy Kobata, Searching for Hapa Bone Marrow Donor

The movies are about the only place where you get a taste of someone pleading for their life.  It’s usually an uncomfortable scene with someone having a gun to their head.   This is different.  This is real.  Above is my friend Krissy Kobata.  Below she’s pleading for her life in print.  I want you to read it.  But before you do I want you to imagine how tough it would be for you if you had to plead for your life.  If my life was on the line I’d sit down at my computer, like I’m doing right now, and bang something out.  But I’ll tell you this, I’d be a mess by the time I was done.

Krissy sent out a note at about midnight.  I’m guessing she worked on it in her head, her heart and with her hands for quite some time before she put it out.  She’s probably exhausted from the effort.

I’d like you to do something.  If you know someone who’s Asian, particularly Japanese and especially half-Japanese and white, I want you to track them down and lassoo them right away.  I want you to tell them to register as a potential bone marrow donor with the simple instructional codes Krissy lists in her note below.  For the medically-challenged bone marrow matching goes almost exclusively along racial and ethnic lines.  And this is where the racial gap once again presents itself in American healthcare.  There’s a huge shortage of minorities on available donor rolls.  Krissy’s best chance at a match is someone who’s the same mix as she is–half Japanese, half white.   There could be matches outside that orbit, but her specific mix is her best shot.  But we’ll take all comers.  Come as you are, who you are.   There have been matches outside of race, though not nearly as many as within. 

Now, read Krissy’s note below:

Let’s make it hapa’n.”

Dear Friends and Family,
I’m writing for a few reasons. The first and foremost is to say thank you. Thank you for all of your support over the past year and a half. One thing I know is that I would not be where I am today without all the love, support and help that has come forward.
With that said, it has been one year and nine months since I was diagnosed and I am still looking for my match. While it’s been a long road, we have been inspired along the way from meeting other patients and their families fighting the same fight. We’ve also had good news that others have found their matches through all of our efforts. These are the things that I keep reminding myself- lives have been saved.
Unfortunately, this summer, and even up until two weeks ago, we experienced the darker side of this disease. I was heartbroken when I learned that three patients who I had gotten to know through all of this lost their battle. Two more had their diseases progress into aggressive Leukemia. I can’t quite describe the sadness I felt in my heart when I heard the news. To be honest, a lot of it was also fear. I’m afraid that this nightmare could become my reality.
This is why I am pleading again for your help. I am going to find my match, but I need each and every one of you to help me. My family and I are in a race against time and we will not lose this battle.
At this point, I’ve had several opportunities to speak to groups about bone marrow registration and donation. I’ve also had the great opportunity to be on local news and Extra TV to try to spread knowledge. Each time, I am asked the same two questions: “Are you scared?” and “How does it affect your life?” My answers are always the same, “Yes.” and “Every day I wake up, I hope today is the day that I find my match.

Many of you have asked me to let you know how and when we need your help. That time is now!

Ways to help:
1. If you aren’t registered yet, we now have a FREE online registration code: http://www.facebook.com/l/29520;join.bethematch.org/swab4krissy

2. If you have joined, please send this on to any and all of your friends/family and encourage them to register as well (the more hapas, the better my chance)

3. If you are unable to register and would like to donate to the Team Krissy cause, you can now do so by submitting donations to Asians for Miracle Marrow Matches (non-profit)
a. Please note, you must put a note on the check that it is for “Team Krissy” non-profit
b. Checks can be sent c/o Patti Nomura (my aunt) at 3749 Lime Ave., Long Beach, CA 90807)

4. We are also working on organizing a run/walk 5K/10K in the spring with Be the Match as well as producing a PSA, public service announcement, to take our message nationally
a. If you know anyone that can help with these activities or have connections with people that would be willing to be a part of these efforts please let us know and we can provide more details

5. If you would like to host a drive at your company, and it is permitted, please let us know as we can help assist in this and A3M or City of Hope will organize everything

I know these are a lot of things to ask, however, if you can do just one of them, it will make a difference. I’ve never taken for granted the amazing friends and family that I have, so thank you for putting forth the energy and effort to help me find my match.

I hope to update you all with good news in the near future.
Love always,
krissy

One of the greatest athletes of all time announced he’s been battling cancer for some time.   Technically Kareem Abdul-Jabbar’s in remission for chronic myeloid leukemia, cancer of the blood and bone marrow.   He’s 62-years-old and has a good chance to beat it with advances in oral medicine.

I have to admit I couldn’t stand the man when I was a boy.  Most of it had to do with the fact that his Lakers beat up on my hometown 76ers.  I didn’t like his goggles and that unstoppable sky hook either.  But I’ve come to admire the man.  I am now a fan of Kareem because of what he represents–a fighting spirit and a goal to educate people about leukemia.

Who knew a 7′2″ black man and a 5′9″ white tv sportscaster had some much in common?   Why bring up race?  Because it matters in bone marrow typing and transplants.  Hopefully Kareem won’t have to get to that point, but if he did his best bet of  finding a matching bone marrow donor would be in the black community.  I know what I’m talking about.  I’ve been a bone marrow donor, researched the issue extensively, and wrote a book about it.  Unlike blood, bone marrow typing falls almost exclusively along racial and ethnic lines.

Author Kevin Walsh after having bone marrow harvested from his bones. A 16-year-old boy received Kevin's marrow in a transplant.

When one is sick with any of 75 disorders that can be treated with bone marrow transplant–leukemias being among the biggest–doctors first look within the patient’s family.  But even then there’s only about a 25-percent chance they’ll find a match from a family member.  They’ll then turn to the outside world of international bone marrow registries.  For a person of color the chance of finding an unrelated match is about 20-30 percent less than it is for someone who’s white.

Cancer doesn’t discriminate, but the numbers don’t lie.  It’s a tougher road for minorities because they’re largely underrepresented on donor rolls.  Awareness would certainly help and there’s no better time than now to put the word out about the need for more people, especially blacks, latinos and asians to take the initial steps to register as a potential bone marrow donor.  November is National Bone Marrow Donor Awareness Month.  I like to say everyone is a match for someone somewhere.  It’s just a question of whether they’ll get sick, and will you be ready to help?

To join the registry visit the National Marrow Donor Program’s Be the Match registry.