Rafu Staff Report
Krissy Kobata’s decade-long search for a bone marrow donor has entered a new phase.
Kobata, who lives in Los Angeles, was 25 when she was diagnosed with a blood disorder called myelodysplastic syndrome (MDS), a condition in which her bone marrow does not produce normal blood cells. The condition is also known as “pre-leukemia.”
Bone marrow transplants require a tissue match between patient and donor — determined through HLA (human leukocyte antigen) typing — and the search starts with the patient’s family members. If a match isn’t found, the search extends to people of the patient’s racial/ethnic background. For Kobata, the pool of potential donors is smaller because her father is Japanese American and her mother is Caucasian.
Her supporters, known as Team Krissy, have gotten some 8,000 people added to the national bone marrow registry through donor drives and online campaigns. A match wasn’t found, but the expanded registry increases the chances that someone else can be helped.
Kobata recently got some good news. “Thanks to medical advancements over the past 10 years, Krissy’s brother can now be what is called a haploidentical donor,” explained Lindsey Nomura, Kobata’s cousin, who manages social media for Team Krissy. “Since we have not been able to find her a perfect HLA match, her doctors have agreed that this new type of haploidentical transplant will be her best option.
“Her transplant is set to happen sometime this fall. They still must undergo more testing and preparation before the transplant can take place.”
Patti Nomura, Kobata’s aunt, said in an update last month, “She will undergo intense chemo for five days, followed by the bone marrow transfusion, all at the COH [City of Hope]. Her stay is estimated at seven weeks if there are no reactions or rejections, then another six months of careful watching at home for signs of rejection …
“We ask that you all keep Krissy in your prayers. A small miracle would be nice, but she is a strong, willful, independent woman who I KNOW will beat this and live a long and happy life.”
According to Mary Halet, director of donor services at Be The Match, the relapse rate for patients who have received a haplo transplant is unknown because the procedure is new.
Meanwhile, the campaign has gotten some high-powered support. New England Patriots quarterback Tom Brady, New Orleans Saints coach Sean Payton, boxer Manny Pacquiao, and actress Chloe Bennet (“Marvel’s Agents of S.H.I.E.L.D”), who is half Chinese and half Caucasian, have shared Kobata’s story on social media. Payton heard about the campaign from his agent, Don Yee.
“I’m on @TeamKrissy now,” Bennet tweeted on Aug. 14. “Let’s help her. If you’re Hapa or if you just want to help go to @BeTheMatch and get a [cheek] swab now!”
“We are getting so many messages and good vibes from everyone because of these amazing people who are taking the time to spread the word!” wrote Nomura. “This is giving Krissy and the team so much strength!”
“These people have taken their celebrity to do good and it’s just incredible,” Kobata told NBC News. “The number of people that are helping makes me so excited because I know there are so many more registries happening because of them …
“Yes, I found my match through my brother, thank goodness. But that doesn’t negate the need out there for all these other patients who don’t have that as an option. And I was one of those for the last 10 years.”
“I was pretty clueless about what I was doing when we first started,” Lindsey Nomura admitted in an update on Aug. 23. “I’m still not an expert at dealing with and responding to all of this media attention. However, over the last 10 years I’ve definitely become a passionate advocate about bone marrow transplants and registration, using these social media connections and platforms.
“The team probably can all agree it has not been easy, chasing down people all day at registration events, dealing with apathy because people don’t want to take the time to understand the situation of someone who is sick and possibly dying of bone marrow failure, all because of their own fears. When it is so close to your heart and a loved one is the one you are desperately doing all of this for, you can bet it’s frustrating!
“It was a mission of mine to break down the myths that scared so many people away from us during these events. This website [teamkrissy.com] and social media have been the best tools for telling Krissy’s story and answering many questions people have about bone marrow registration and donation … Even more so, I’ve been rejuvenated with the attention we’ve gotten and Krissy’s rush to get a transplant …
“Krissy has a ton of support and has touched so many people … We are doing good things each day that we share Krissy’s story and inform people about this HUGE need for more registered donors in the National Marrow Registry. I can’t help but think that we have probably saved quite a few lives through the work we’ve done so far, and who knows how many more we can save in the future, from the work we’ve done in just this week!!
“The response that we’ve gotten from news stations, celebrities, and other websites and organizations has been so awesome and affirms that we can make a difference and we are being noticed, especially when millions of other people are at least viewing what we have to say.
“I’m happy enough knowing we have, at the very least, planted a seed. People can start by thinking about Krissy, and then maybe someday with the right amount of exposure and our relentless twittering and post sharing they will see that they are needed in the bone marrow registry, and that they can make a difference too!”
Tissue typing can be done through a cheek swab, an improvement over the blood tests that may have stopped some people from registering in the past. Be The Match is seeking people between the ages of 18 and 44 because those in this age group are selected as donors 95 percent of the time. Those aged 45 to 60 can register but are required to pay a $100 fee.