By J.K. YAMAMOTO, Rafu Staff Writer
A “reunion” between a former MDS (myelodylastic syndrome) patient and the man whose bone marrow saved his life was the highlight of Asians for Miracle Marrow Matches’ 17th annual gala dinner, held Oct. 4 at the Hyatt Regency in Los Angeles.
Established in 1991, A3M seeks to increase the number of Asians and other minorities on the national bone marrow donor registry. Many life-threatening blood diseases can be cured by a bone marrow transplant, but there must be an exact tissue match between patient and donor, and the best chance for a match is among people of the same race/ethnicity.
“When A3M first started, there were fewer than 5,000 Asians in the registry,” said ACM Director Shin Ito. “Fast-forward to today. There are now over 700,000 Asians in the registry. It sounds like a lot, and it is a lot … It’s something that we can be proud of. But that being said, there are still far too many patients that don’t make it, and that’s why we still need your support and that’s why we’re still here doing what we do.”
Donor drives are held regularly at Asian American community events, and advances in technology have helped. In 1991, a nurse needed to be present to draw blood samples for testing. “A few years later, we went to a finger prick … Now it’s as simple as a cheek swab,” said Ito.
But even finding a match is not the end of the story, he continued. “The sad reality is over 50 percent of the people we call do not come forward for various reasons.”
One of the patients who received a successful transplant is architect Shunzo Kotani, 65, who came to the U.S. from Japan over 35 years ago. He was diagnosed with MDS around 2009 and was kept under observation. Last year, he began feeling more out of breath than before, he bruised easily, his speech was inaudible, and he could not hold his chopsticks. He underwent brain surgery, but also needed a marrow transplant.
After no family members were found to be a match, a search for unrelated donors began, and three possible matches were found within a week — “a miracle,” Kotani said, since searches can take months or years. One was unable to donate, narrowing the list to two.
The donor is Thomas Yamamoto, 22, who signed up for the National Marrow Donor Program in March 2013 on the USC campus. He was surprised to get the call only three months later. He initially said no but changed his mind.
“I just didn’t know anything,” Yamamoto recalled. “… Most people think [when donating]bone marrow, it’s like drilling into you to get it, but mine was not like that at all. It was very simple, just injections to get prepped and the actual collection process. So after I researched this more, I didn’t think it was so bad, so I decided to say yes.”
“I’m so excited to meet him. Maybe I’m crying,” Kotani said just before he was introduced to Yamamoto on stage. The two embraced as the audience applauded.
These meetings are called “reunions,” explained emcee Denise Dador, health specialist on ABC 7 Eyewitness News, because they are “a reunion of the marrow, a reunion of the soul.”
Asked if he felt like a 22-year-old, Kotani said, “Yeah, I feel young.” He also noted that his taste in food has changed, such as liking chocolate more — one of Yamamoto’s favorites.
Dador joked that the two should discuss Yamamoto’s habits so that Kotani will know what else to expect.
Yamamoto told Kotani, “It’s crazy. I mean, I didn’t know anything at all about what you went through. I’m just very happy for you and your family.”
“Seeing these reunions just strengthens my faith in the work that A3M does,” Dador commented. “We know that without their commitment and hope for patients they serve, these miracles would not take place.”
Speakers included Alex Tung, a surfer who was diagnosed with leukemia in June. “At first I thought they did have someone matching, but apparently they were part of the 50 percent that did not answer their phone,” he said. “So here I’m still waiting for a donor and I’m very hopeful …
“This journey’s been amazing. The first month was very harsh with the unknown, going through all the side effects of chemo and all the terrible things that come with it, but with each passing day, with the support of my family and our friends here in Los Angeles, in California, Hawaii, Taiwan and China and all over the world, I’m getting stronger and stronger every day. Standing here I actually feel stronger than before I was diagnosed with leukemia.”
Ironically, Tung said, the disease has been a “blessing” because of “the outpouring of love from people everywhere, all parts of my life, all different times of my life. It has just shown me that life is beautiful, what a wonderful world …
“It’s a cancer that can be cured strictly by the love from your hearts. Whoever needs a bone marrow transplant, needs a donor, can be saved not by any amount of money, not by any medicine, but strictly by the heart and the love of individuals, of loving people like you guys.”
Once cured, Tung pledged, he will work with A3M to increase the number of Asians on the registry. “I want everybody to have the same fair chance of having their life saved.”
Alice Song spoke on behalf of her son Timothy, who received a marrow transplant 2½ years ago at the age of 2 and is now healthy and thriving.
“Timothy was diagnosed with a rare genetic disorder called chronic granulomatous disease (CGD) when he was 2 months old,” she said. “Before his diagnosis, I had never heard of this disease and neither had most people. Except for the swollen lymph nodes he looked fine … but inside his body was broken and did not function properly. This disease would take his life prematurely, living in fear and dependent on medications. My life changed drastically from that moment on.”
On a mission to save her son, Song contacted medical experts across the country, and the consensus was that he needed a bone marrow transplant. “The fact that there was a cure was a blessing in and of itself. We had hope. From this point, the search began … to find a match from an unrelated donor. We contacted Be The Match and they connected us with A3M.”
Not one of the 11 million people on the registry was a match, so the search focused on the Korean American community through newspapers, TV and social media. “We could not have done this alone,” Song said. “The support system we had was wonderful. As the mom of a recipient, I cannot describe to you the relief and the gratitude I felt when we received a phone call that we had found a donor. It was a miracle.”
She later learned that the donor was a non-Korean woman living in Germany.
Texas Children’s Hospital in Houston was chosen as the transplant center because its doctors had experience with CGD. “My prayer was that the transplant would be textbook, that everything would go according to plan … Though we had some complications, they were minor,” Song recalled. “I know that Timothy has endured through more pain and suffering than many people, but to see him smiling and living a normal life was worth the pain and the tears … He loves attending preschool and enjoys life …
“I believe that adversity brings people together, and this experience has been a blessing … We have experienced love, support and newly formed relationships that wouldn’t have been forged otherwise.”
The whole family, including Timothy’s father Daniel and sister Claire, participated in the raffle drawing.
Nancy Sakakura, an A3M supporter and former MDS patient who received a marrow transplant in 2006, remembered being given the shocking diagnosis. “I was not only scared for myself, I was also scared for my family. My boys were in elementary school … They were so young.”
Having signed up to be a donor during the Nikkei Games at Cal State Long Beach many years before, Sakakura got in touch with A3M, where “I was now given hope and channeling all the sadness into a productive, useful array of things we can do. We gathered with many of my friends and family, the OCO (Orange Coast Optimists) group. We worked with A3M very closely and hosted drives tirelessly … all over the place, L.A., Orange County, San Fernando Valley, even San Diego … We had people working at these drives, volunteers from grandmothers all the way down to little kids.”
Recently, her kids worked at an OCO basketball camp and were paid $100 each. “Do you know what they did? Both of them took their checks and donated it to A3M. I was so floored, beyond touched … What a selfless thing to do … I found out later that a lot of the other kids that worked at the basketball camp did the same thing … Let’s let them serve as an example to all of us.”
“Precious Little Girl”
Erica Westfall represented her late daughter, Sofia Flores, who was born in 2011 and diagnosed with a rare form of leukemia when she was 19 months old.
“Sofia’s of mixed race, half white and half Mexican, and no match turned up among the millions of people that are on the national registry because only 10 percent are Hispanic,” Westfall said. “… Team Sofia was formed and we worked tirelessly to register as many people as we could … Together with A3M, we hosted 35 drives all over Southern California, including Pasadena, Glendora, Los Angeles, Long Beach, Murrieta, San Diego, Victorville, and we added 2,200 people to the national registry …
“We were inspired, we were loved, we were uplifted and we were renewed by the people that came from so far away because they saw our little girl’s smile … They felt compelled to come join.”
Sofia endured intubation for a collapsed lung, blood transfusions and chemotherapy. A haploidentical transplant from her father, Ignacio, who was only a half-match, was attempted.
“Unfortunately, after everything she endured, my precious little girl was taken … exactly one year after she was diagnosed,” Westfall said, sobbing. “She passed away because we were unable to find a match for her … No child in need should go without their match and miss the opportunity of life. No parents should ever have to lose their child after such a valiant fight. No family should have to endure pain and mourning in the wake of such strength. That is why there’s still more work to do …
“We’re still doing drives in my daughter’s honor … It gives me tremendous peace to know that her life was not in vain … The silver lining of going through this horrible ordeal is that from the people that we registered, at least nine other patients have found a match, and this is my daughter’s legacy.”
Ito paid tribute to Sheri Olmon, a non-Hodgkin lymphoma patient who was one of A3M’s first mixed-race clients. She received her transplant 15 years ago and continued to volunteer with A3M until her death due to a car accident earlier this year. Her mother, Elsie Myers, attended the gala.
Ito also thanked Ken Lin, who donated marrow to a patient who is now out of the hospital and at home recovering, and Derek Inouye, who joined the registry as soon as he turned 18 (the minimum age). Derek is the older brother of Dale Inouye (1998-2008), for whom the Dale M. Inouye Foundation is named.
Co-chaired by Gene and Vickie Kanamori, the event included an appearance by Bell Tsou of LA 18’s Mandarin talk show “Midday Buzz” and a performance by Leisure Brown, which consists of Jason Arimoto on ukulele and Brad Ranola on percussion.
Photos by J.K. YAMAMOTO/Rafu Shimpo