Ka Wai Ola - Office of Hawaiian Affairs, Volume 28, Number 5, 1 May 2011 — Kamehameha graduate seeks Bone marrow transplant [ARTICLE+ILLUSTRATION]

Kamehameha graduate seeks Bone marrow transplant

Odds for a match are best within the same ethniGity By Melissa Moniz The statistics are staggering: Native Hawaiians make up only 0.1 percent of the bone marrow donor program, mixed ethnicities make up just 3 percent, and of the 1 .5 million people in Hawai'i only 78,000 are registered as a bone marrow donor. "The big need is always ethnic minorities, specifically Native Hawaiians as they are very underrepresented," says Roy Yonashiro, Recmitment Speciahst for the Hawai'i Bone Marrow Donor Registry. ' 'The only way to better the odds for someone to find a match is to sign up more people of their race because studies have shown that the best ehanee for a match is someone of the same ethnic background." Natalie Oana, a Kamehameha Schools '77 grad who was diagnosed with acute myelogenous leukemia last February, is detennined to change those statistics.

"To be honest we may not find a donor for me in time, but we hope to raise that percentage so that other people will have options," says Oana, who is 50 percent Hawaiian and also English, Irish, Portuguese and Chinese. "We've already registered close to 500 people in the last eouple of months. My daughter did a drive at Punahou and got about 85 people to sign up, whieh is amazing considering you need to be at least 18yearsold." Although leukemia has been her fight for the past year, Oana has not let it define her. Oana is a single mom of daughters Ieannin-Mehssa, 25, and Brigitte Russo, 18. She is also a professional volleyball player who got her start at KS as an all-star who earned several state championships. She works at Partners In Development Foundation and is the Curriculum Developer for Hālau Kū Māna Charter School. "The iniīial shock of finding out was extreme," says Ieannin-Melissa, who will be graduating with her law degree from the University of Hawai'i Richardson School of Law this month. "It was surreal and for me it seemed like it wasn't really happening." The discovery of the leukemia was sudden. Oana recalls being fatigued after hiking Makapu'u and just not being as quick as she usually was. Later as a booth chairwoman at Punahou Carnival, she says she was also fatigued and had a little headache, so she went to the doctor to get checked out.

"I was told I had to go inimediately to the hospital because my doctor told me that I had no inunune system so if I caught a cold I could die," says Oana, "I'm an athlete. I have had major surgeries or illnesses. And I had just done an exam a year before to go play for the national volleyball tournament. Long story short, I went to see an oncologist and he told me my body was full of leukemia. I couldn't even go home. So I stayed there for a month and they treated me with chemotherapy. In about six weeks I was able to eome out, but I had another six months (on and off) of chemotherapy treatment. Eaeh time I was able to survive it." The leukemia eame back in December and Oana spent the holidays in the hospital receiving more chemotherapy treatments. "My nioni has always been a strong person," says Brigitte, a senior at Punahou. "She's always been there for our family, but the way she's kept her positive attitude through this amazes me." Oana is in second remission right now. And although she has responded well to chemotherapy treatments, a bone marrow transplant is her only hope for long-tenn survival. "It's a time crunch thing because with this type of leukemia eaeh time it comes back the remission gets shorter and shorter," says Oana. "So right now I have a small window of opportunity. Eaeh time it comes back there's the fear that the chemotherapy won't work and also that my remission will last for too short of a time, because I can't get a transplant unless I'm in remission. "With the transplant I'm possibly able to gain another 10 to 20 years of life." Yonashiro, of the Hawai'i Bone Marrow Donor Registry, says, "When people sign up we want them to really truly want to help someone and want to be called. "The worst thing to do is give a patient false hope. If you sign up and are matched but then turn it down we need to relay that to the patient. That's really depressing for a patient to know there's someone out there who could save your life but doesn't want to." Oana has experienced dissappointment four times.

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B0NE MARRQW DRIVE Team Nat is organizing a drive on Sunday, May 15 from 8:30 a.m. to 4:30 p.m. at the Waipio Soccer Complex parking lot above field 5. Visit www.curenat.com to leam more about Natalie Oana and see updates on upcoming drives. Donors must be between the ages of 18 and 60 and in good general heahh. For information on becoming a donor, eall the Hawai'i Bone Marrow Donor Registry offices at 5476154 or visit www.marrow.org.

Nalalie Oana, center, posed with daughters Jeannin-Melissa Russo, left, and Brigitte Russo in December. "I took this picture just before going back into the hospital for more treatment," said Oana. "I knew I would lose my hair again and wanted to get a decent picture with my girls for our Christmas card." Photos: Courtesy of īeam Hat

'They actually found four possible matches for me, but they became unavailable, whieh means either people tumed it down or they can't be contacted or have gotten sick," says Oana. "So I had the hope and when it didn't happen it was very devastating. And it could just be they can't contact these people because they moved or changed their phone number, so we ask that people please keep their infonnation updated." Oana's strength has served as a platfonn for her family and friends to rally around. Friends and family have fonned Team Nat to serve as a voice to increase the number of Native Hawaiians and multiethnic registered potential donors. For the latest Team Nat updates, visit www.curenat.com. 'This goes beyond my mother," says Jeannin-Melissa. "It's about Native Hawaiians coming out to support eaeh other. We need to get those percentages up." Oana and Team Nat are organizing a drive on Sunday, May 15 from 8:30 a.m. to 4:30 p.m. at the Waipi'o Soccer Complex parking lot above field 5. ' 'When you register, it' s j ust a s wab in your eheek and takes 1 0 seconds - you could save a life in 10 seconds," says Oana. "We're hoping to bank as many multiethnic and Native Hawaiian possible donors as we ean. "And this isn't about me, I'm just a platfonn right now for the message because usually they say by then time you're in second remission and you're looking for a bone marrow transplant that it's already too late. It takes too long." "My mom never cried in front of my sister and I until this day and it's been almost a year and a half now," says Jeannin-Melissa, an intern at the Office of Hawaiian Affairs. "She's always told us not to worry about it because she'll figure it out. She's never shown any weakness. Even though she's the weakest of the three of us physically, she's mentally the strongest." Oana describes her fight with leukemia as "a big volleyball match of life." "It's about setting a mental goal and getting to it," she adds "And being a single parent, my eoneem is my children. It's been very scary, but I had to be really strong for them so I couldn't fall apart. I take it day by day and we just treasure life." ■ Melissa Moniz, is a Contributing Writerfor Ka Wai Ola AformerAssociate Editor at MidWeek she has chosen a new career path as afull-time mom to spend more quality time with her husband and two young daughters.

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Nalalie Oana, second from left, with her daughter and classmates encouraging folks to "get swabbed" and possibly save a life.