I’ve been watching the NHL Draft for almost three hours now.  The top moment was not Edmonton’s top pick Taylor Hall.  It was when the St. Louis Blues selected Jaden Schwartz with the 14th pick.  During his interview afterward, Jaden made it a point to say hello to his sister, 20-year-old Mandi.  Mandi is in the hospital in Regina, Saskatchewan, battling leukemia, and searching for a bone marrow donor.

Mandi is a hockey player at Yale.  What was so nice was how articulate her 18-year-old younger brother was in giving the shoutout.  It was just enough to let viewers know how much he cared about her, and what she was going through, without disrupting the flow of the interview.  That took a lot of poise and maturity beyond his years.  The Twitter world went nuts after he said it.

Courtesy: David Silverman/dspics.com

And Jaden did something else, he got the plug in for how viewers can help.  Again another tricky thing, but Jaden delivered the website address for potential donors to register.  Honor Jaden’s sister like he did.  Who knows?  You could be the match that saves her life, or the life of someone else.  Log on to www.becomemandishero.org.

I just returned from a whirlwind trip that included two speaking engagements in 12 hours, 350 miles miles apart.  The first was to Rotarians in Boxborough, Massachusetts on Friday night.  As soon as I finished I got in the car and drove seven hours through the night to speak Saturday morning to bone marrow transplant survivors and their families at Temple University in Philadelphia.  I shared with them my story of being a bone marrow donor and writing a book about it, The Marrow in Me.

Receiving Paul Harris Fellow Award in Boxborough, MA

The trip was physically exhausting, but I got such a lift out of telling and hearing stories of hope from others.  Villanova Football Coach Andy Talley told the story of his star football player, Matt Szcur, who turned up as a bone marrow match for a one year girl he’d never met.

Matt Szczur, Donor for Infant Girl

Joy Janice, searching for donor

 I had been riding the trip’s high for a couple of days until I got an email yesterday that made my heart sink.  The email introduced me and dozens of others on a long email trail to Joy Janice of suburban Philadelphia.  Joy had breast cancer a couple of years ago and beat it with the usual treatments which included chemotherapy.  Sadly she has cancer again.  It’s not breast cancer, it’s leukemia; the unfortunate complication from the chemo. 

Mitch and Joy

Joy doesn’t have brothers and sisters, so she’s searching for a matching stem cell donor.  So far no luck in the registries.  Be a hero, register as a potential donor today.  Believe me, there’s no greater joy than receiving the phone call that you’ve turned up as the chosen match to join someone on what could be a lifesaving journey.  Matt Szczur I’m sure would tell you the same.    Click on the link for the Be The Match website, http://join.marrow.org.  After completing the qualifying questions(toward the end of the process), enter JJ1605 into the field labeled “Promo Code”.

A cheek swabbing donor kit will be mailed to you.  I like to say everyone is a match for someone somewhere in the world.  It’s just a question of whether that person will get sick, and whether you’ll be in a registry.  Swab away.  It would mean a lot to me, and I know it would mean the world to Joy and those who care about her.

There’s nothing like going home.  This weekend we’ll be back in familiar territory for two book signings.  I’ll be greeting readers and signing copies of  The Marrow in Me at suburban Philadelphia area Barnes and Noble Stores.  Both signings are on Saturday February 13.  The first is at The Concord Mall Barnes & Noble Store, Concord Pike, Wilmington, DE from 1-3pm.  The second is at the Barnes and Noble Store in Exton, PA from 4-6pm. 

After the signings we will rendezvous with the usual suspects from Webster Farm and beyond, for pizza and beer at Romeo’s in Branmar Plaza.  Crash our party, you wouldn’t be the first.    I don’t know if we can duplicate one of our famous driveway parties that featured karaoke and good grub, but we can try.

The girls will be staying at the Burrus household.   Jean and I will be staying with the Simons, who’ve graciously taken us in–including Beverly, our German Shepherd.  We will drink Gary’s beer, but will otherwise be good guests at Hotel Simon.  Cheers!

Gary and Barb Simon, legendary karaoke artists and Hotel Simon proprietors

Mark your calendars for this weekend.  I will be sharing my story and signing copies of The Marrow in Me at the Walpole, MA,  Barnes and Noble store, Saturday February 6 from 1-3pm; and at the Peabody, MA, Barnes and Noble, Sunday February 7 from 1-3pm.  Come out, say hello and give the gift of reading.  See why some people are comparing The Marrow in Me to other best sellers, Tuesdays with Morrie and The Purpose Driven Life.  

Sandy & Chris Pablo

My hanai brother, Chris Pablo, was memorialized yesterday.  It was a final public sendoff for a man who is the heart and soul of my book, The Marrow in Me.  The picture on the cover is of me recreating Chris Pablo’s great golf ball discovery.  For those who need a refresher, or those who are new to my blog and The Marrow in Me story, Chris found a special ball in his basket at the driving range some 14 years ago.  The ball had the words BEAT LEUKEMIA stamped on the side.   Chris was diagnosed with the same disease just weeks prior.  Finding the ball gave him hope that he would find a cure for his cancer.  He did, with a bone marrow transplant that came from a man missing most of his legs.

By the time we got around to creating the cover shot of The Marrow in Me, Chris wasn’t well enough to do it.  So I did it for him.  We’d lose Chris a month after the book was released, but he had a chance to read through much of it.  He called to playfully scold me, “You kept me up all night and made me cry,” he said a few months back.

I’d be honored if you’d read the book to get to know the man behind the video clip below.  Without Chris I never would have been a bone marrow donor myself.  And because of Chris sharing his story, 86 other people searching for a bone marrow donor got their match and went to transplant too.  The book is inspiring, witty, tragic and triumphant.  Some have compared it to Tuesdays with Morrie.  A sizable chunk of the proceeds is going to cancer treatment and research programs, including The Hawaii Bone Marrow Donor Registry, which played a key role in Chris’s transplant and mine.  And if you really want to honor Chris, please click here to register as a potential bone marrow donor.  That’s probably the best way we can honor his memory.  Aloha and Mahalo, Kevin.       

Watch Video Clip of Chris Pablo Memorial

I start most days with the newspaper.  It’s a habit and it’s my homework.  Much of what I read I’ll be talking about in some way, shape, or form later that night on Comcast Sportsnet Central.  I usually read the sports page while bobbing up and down on the elliptical machine at the gym.  But sometimes you have to change the routine and that includes the reading material.  Today I saved the sports page for last.  When I read Bob Ryan’s column, I almost fell off.

Boston Globe Sports Columnist Bob Ryan

Bob wrote a column that had little to do with sports and everything to do with life and the mighty struggle to stay alive.  The story was about one of Bob’s favorite athletes over the years, former Boston College and Pro Basketball Player Danya Abrams.  Actually the story was more about Danya’s 11-year-old daughter Tatyana, a sixth grade schoolgirl, who has acute myelogenous leukemia and is desperately looking for a bone marrow donor.  If you don’t know the dyanmics of how bone marrow matching and transplants work, let me be the educator.  Finding a match goes almost exclusively along racial and ethnic lines.  And that’s a problem because Tatyana is black and there are far fewer available minority donors than white, as much as 30% fewer.

Tatyana Abrams, Looking for Bone Marrow Donor, Photo Courtesy of Teresa Herbert

None of these statistics is news to me.  I wrote a book about it, The Marrow in Me,which details my unlikely journey to becoming a bone marrow donor.  I specifically highlight the unfortunate minority donor shortage.  When Bob came in to Sportsnet tonight to talk about the Celtics and Miami Heat game I gave him a copy of my book and told him the story of how I became an anonymous donor for a 16-year-old boy who had acute myelogenous leukemia, just like Tatyana Abrams.  I couldn’t believe the look on his face.  I’m sure it was kind of like the look on my face when I read his column in the Boston Globe.  I saw my life in print, but in reverse.  I was honored and humbled to be a part of a young man’s life, if only for a short time.  I’d do it again in a second and I’d love to do it for someone like Tatyana, if only it were that easy.

Do me a favor, please come to Tatyana Abrams’ registration drive this weekend January 10 at Butler Elementary School, 1 Patrick Clark Drive, Avon, Massachusetts from noon to 4pm.  Or, if you can’t make it in person, you can register to become a potential donor by clicking here, www.bethematch.org.  A simple cheek swab will start the process.  You are a match for someone, somewhere in the world.  It’s simply a question of whether they’ll get sick and whether you’ll be reachable.  And if you’re a minority of any kind, you’re especially needed.  Let’s not leave any doubt though about who’s needed most in this situation–African Americans.  The link above will give you information on how to get a testing kit sent to you for free.

 And if you really want to know what you’re getting yourself into, if you are lucky enough to get the call and mission of a lifetime, please read my book.   The Marrow in Me will answer all your relevent questions about what being a bone marrow donor is really like.  There has never been a book written about bone marrow donation between strangers until now.   Giving your bone marrow to someone else is courageous and generous.  But you know what?  It’s like a gift is given back to you.  I’ve experienced no greater satisfaction in my life than having that chance to share a part of me with someone else. 

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

Matt Szczur, Villanova Wide Receiver

Andy Talley, Villanova Head Football Coach

“No, I was just watching TV late one night years ago and I saw this story about the need for bone marrow donors and I thought, hey I can do that.  I have 100 players I can register,” he said.

So what started in 1993 with Talley’s 100 or so players and friends has grown into a revolution.  With the National Marrow Donor Program’s help Coach Talley has started the Get in the Game and Save a Life Program which has registered more than 11,500 people.  Twenty six other college football programs across America are copying the Coach’s plan.

“You know Coach this’ll be your legacy,” I told him as he grabbed the breakfast check.

“Well we’ll see,” he said with a smile.

And we’ll all be watching, hoping and praying Matt Szczur’s gift of life saves the life of the little girl.

Lea McNamara getting the blood drawing equipment ready

Lea McNamara getting the blood drawing equipment ready

Here we go again.  My life is a little crazy right now but I wouldn’t trade it for anything.  I’m sitting next to Lea McNamara in a Blood Mobile and she’s about to stick a needle in my arm.  We’re chatting and we talk about my fear of needles.  “You’re afraid of needles?” she asks.

“Yes but not so afraid I won’t donate blood.  Plus I’ve donated bone marrow so I’ve dealt with worse.”

So while we’re having the good chat I bring up my book The Marrow in Me and Lea gets a little emotional.  “What’s wrong?” I ask.

“My dad has leukemia,” she said.

My heart lifted into my throat.  Once again someone with a major blood cancer connection plopped down right in front of me, or vice versa.   I don’t even know if I should even bother to ask why anymore.  These strange coincidences are actually becoming almost commonplace.   See the story I posted below about Eneias and Me and you’ll see what I’m talking about.

The good news is this, Lea’s dad is in remission.  And my encounter with his daughter I believe serves a purpose bigger than a blood donation.  But blood donation is important too.  I pumped out at bag of type-o positive blood and chased it with two mini cans of grape/cranberry juice and a bag of pretzels feeling charged up about the effort.

Kevin and Lea after blood donation

Lea later charged out of the bus in an effort to hook up with her buddies for a soccer game.  It’s my guess she’ll probably share her book boy encounter with her friends and maybe someone will log on and check out the posting.  If you’re one of Lea’s guy or gal pals, give her a high five for me.  She’s doing great work and you’re lucky to have her as a friend.  But then again you probably know that.  Share a comment below.