What: The SAM Tour (Sharing America's Marrow)
Become a possible bone marrow donor. Sign a form and have cheek swabbed, free
When: 6-10 p.m., today
Where: Warped Wing Brewing Company, 26 Wyandot St., Dayton
More information: 937-222-7003
Tonight, Sam and Alex Kimura come full circle.
Almost 60 years ago, their grandfather, Joe Kitchen, was an All-City basketball player for Stivers High School. Awarded a scholarship to the University of Louisville, he helped lead the Cardinals to their first Final Four. The school now awards an annual scholarship in his name, one of the centerpieces of its sports complex is the Joe Kitchen Memorial Pavilion and several years ago it inducted the rugged 6-foot-4 forward into its athletic hall of fame.
Kitchen is also enshrined in the Stivers Hall of Fame.
Tonight Sam and Alex, who both were athletes at Ballard High School in Louisville, return to Dayton. They’ll be at the Warped Wing Brewing Company on Wyandot Street between 6 and 10 p.m.
Although they’ll be just a few blocks from Stivers, they are not searching for their past.
Sam is looking for her future.
And because of that, some folks in the Miami Valley might find theirs, too.
Five years ago, then-17-year-old Sam — short for Samantha — found herself regularly getting fatigued as she played high school lacrosse.
“I started to need an inhaler and I was bruising easily, but I still didn’t think a lot of it,” she said. “Then it came on suddenly. I had a fever, chills, vertigo. I couldn’t really move. When I didn’t get better, they took me to Cincinnati Children’s Hospital, did a bone marrow biopsy and found out I had severe aplastic anemia.”
It’s a rare blood disorder in which the stem cells and marrow are damaged and don’t produce enough blood cells for the body.
“When she was first diagnosed she was given six months to live,” Alex said. “I was absolutely crushed by that — we all were.”
Sam said she spent that summer of 2010 in isolation and when she responded to treatment, she was allowed to return to school in the fall. Her sports career, though, was over.
Although the immunosuppressive drugs and other medicines she takes can keep the disorder at bay, she has a 50-percent chance of relapsing and a 40-percent chance of developing leukemia, Alex said.
A bone marrow transplant offers the only cure.
“They told me as her only sibling I had the best chance of being a donor for her, but unfortunately I wasn’t a match,” Alex said. “That really broke my heart.”
Actually, though, 70 percent of the people in need of a transplant must go outside their family to find a donor.
The National Bone Marrow Registry has over 18,000 people on its waiting list and only 40 percent of them will ever find a suitable match.
After her sister had lingered on the wait list for a few years, Alex — now 24, two years older than Sam — decided she had to do all she could to try to improve the odds.
“When she was first diagnosed, we hosted some donor drives around Louisville and then at WKU (Western Kentucky University), where I was going,” Alex said.
Eventually, Sam came to school there as well and, as Alex said: “We must have signed up half the people at our school, but we didn’t find a match. I kept thinking we could sign up a lot more students if we somehow got to other schools and finally in January last year we just said, ‘What are we waiting for? We’ve been talking about this for years. Let’s do something.’ ”
They came up with a bold plan.
The sisters and their good friend and neighbor, Taylor Shorten, decided to travel to all 50 states, visit close to 200 cities and try to sign up 50,000 potential bone marrow donors.
While they would try to find a donor for Sam, there was a better possibility they would find one for someone else in need. In the process, they also would raise awareness about blood cancers and dispel some of the myths about bone marrow donation.
To do this, they would visit college campuses, brew pubs, rock concerts, large companies and any other place that would have them.
The cross–country odyssey began Jan 19. Ohio is their 22nd state and by the time they get to Dayton, their 60th city, they will have traveled over 6,500 miles.
Along the way they’ve been guests on the Steve Harvey Show and last week they were profiled on the CBS Evening News with Scott Pelley.
So far the trip has been much more than expected … and much less.
“We’ve experienced the highest of highs and the lowest of lows,” Alex admitted.
While they have signed up close to 8,400 potential donors, it is far less than they’d hoped for at this point and they admit their lofty 50,000 goal might have to be reduced by at least half.
“We found if we ask 20 people (to register), 19 will say no,” Alex said quietly. “Some days are worse, some are better, but none of us expected to hit the road and have what we were doing so negatively viewed by some people.”
A lot of the refusals are based on misinformation or ignorance, but sometimes the turn-downs have been delivered with cruelty or laughter.
There was a guy at one Atlantic 10 Conference school who heard Alex’s plea to help fight cancer, looked straight at Sam, laughed and said, “No, cancer is fun … that’s how doctors get paid!”
“That just kinda crushes you,” Sam said softly.
The upside has been the inspiring stories they’ve heard from cancer survivors, the willingness and enthusiasm they’ve gotten from some people who have taken part and the real rewards that have come as they’ve continued to add names to the national registry.
So far their work has yielded 37 potential donor-recipient matches, five of which would immediately save lives.
And their efforts have brought about one other unexpected offer:
An out-of-the-blue marriage proposal.
A simple pitch
When they decided on the year-long journey, they settled on a name, The SAM Tour, short for Sharing America’s Marrow. They set up a comprehensive website (sharingamericasmarrow.com), garnered the support of Delete Blood Cancer DKMS, the world’s largest bone marrow donor center, then made their most definitive step.
Sam and Alex sold their cars and bought a tricked-out van for their travels.
As for their route, they compiled a list of cities where they or a family member either new someone or there was a college they could visit.
“For a lot of cities we’ll send out 15 or 20 emails to various places, hoping someone will respond,” said Taylor, a Boston College graduate.
Among the 48 schools they’ve visited have been Duke, Princeton, Maryland, Georgia Tech, Georgia, Alabama, Auburn, Florida, Florida State, Ole Miss, Dartmouth, Georgetown, Virginia, Appalachian State and Richmond.
When they set up somewhere, their pitch is simple — “Hey, would you like to help us fight cancer?” — and so is the process to become a potential donor.
“It takes just a couple of minutes and doesn’t cost a thing,” said Alex. “We have a little conversation first, they fill out a form and we do a cheek swab. That’s it. And that puts you on the registry to see if you are a match.”
The conversation, Alex said, is so people know exactly what they are doing and, in the case of Sam, one person they could be helping.
“People think it’s like giving blood, that if they don’t do it, someone else can just as easily,” Taylor said. “But it’s not that way. Every person is unique and you may be the one match someone is looking for.”
It was that prospect of helping that so excited a University of Vermont student they approached, Alex said: “He was like, ‘Yes, this is turning out to be a fantastic day!’ ”
The two greatest turnouts on the trip so far came at the University of Cincinnati, where 248 people registered in one day, and at the University of Alabama, where 298 signed up.
“Some days I feel sad about humanity,” Alex said, “but then there are other days like those where people restore my faith because they are just so kind.”
‘Right thing to do’
I caught up with the three women early Sunday afternoon in downtown Columbus. They seemed a little down at first. They had had an event at a local brew pub the day before and had signed up six people.
“It wasn’t real good, but you try to remember that each time we sign up just one person that means one person’s life who could be saved,” Alex said. “So we signed up six and that’s six potential matches.”
Tuesday night, the women were setting up at the Newport Music Hall in Columbus where the Irish rock band Kodaline was appearing.
Tonight, they’ll be part of the “Real Ale Wednesday” festivities at Warped Wing Brewing in downtown Dayton. Each Wednesday, starting at 5 p.m., a different cask of special beer is tapped there. This week it’s Self Starter-Session IPA. It’s a tip of the mug, so to speak, to Charles Kettering, the local inventor who held 186 patents and developed the self-starter for an automobile. The beer name, though, is also an acknowledgment of any person who is a self-starter.
Sam, Alex and Taylor could fit into that category and when they made their pitch, Joe Waizmann, the co-founder and president of Warped Wing, said it was “a no-brainer” as far as his company’s involvement.
“Look, it’s the right thing to do,” he said. “It’s a way to do something good for the whole community.”
In the five months they’ve been doing this, Sam, Alex and Taylor have noticed a few trends.
Of the people willing to register, they estimate 70 percent have been women.
“I just think women have more of a nurturing feeling,” Alex said.
To sign up you must be between 18 and 55 years old, and the target audience is 18 to 26, Taylor said.
“And that’s the paradox,” she smiled. “That age group makes the best donors, they tend to be the healthiest, but they are the most reluctant.
“Older people are the ones who want to do it the most. They’re not as focused on themselves. They’ve lived more and they understand the impact of what they can do. And we’ve found that anybody whose family has been affected by blood cancer is happy to do it.
“So each day you just never know what kind of response you’ll get.”
But nothing topped that proposal that came earlier this month.
Taylor nodded to Alex. After all, it was her story to tell.
“This guy showed us around part of the day and then he makes this joke about us getting married,” Alex said.
He might have wanted to share his life, but he wasn’t into sharing his marrow.
He wasn’t willing to register.
“If you’re willing to swab your cheek, you might still be in the running with me,” Alex said with a laugh. “If you refuse, well, that’s it. You kind of decided your fate.”
And just when you could have helped decide someone else’s.
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