#TeamKrissy Raises Awareness of Need for Mixed-race Bone Marrow Donors
September 11, 2017 | by Samantha Bonar
Those persistent marks eventually led to a diagnosis of a blood disorder called myelodysplastic syndrome (MDS). MDS is a condition in which the bone marrow does not produce normal blood cells. It is sometimes called "pre-leukemia."
“We researched everything on MDS, got put in touch with City of Hope and ultimately determined that a bone marrow transplant would have to happen at some point in my life,” Kobata recalled. “The nice thing was that for almost 10 years I was basically very stable.”
Kobata immediately joined the bone marrow transplant registry, seeking a match, but being of mixed heritage, with a Japanese father and a Caucasian mother, she has been unable to find a match, even after a decade. A mere 4 percent of those on the registry are of mixed-race background, making it very difficult for those in this population to find a donor.
Team Krissy was formed in 2008 to support Kobata in finding her bone marrow donor match. Since then the team has hosted many drives and fundraisers, mostly in Southern California and Hawaii, and has succeeded in signing up thousands of new bone marrow donors and finding matches for many patients. But it never found a perfect match for Kobata.
According to the National Marrow Donor Program, a patient’s likelihood of finding a matching bone marrow donor on the registry varies depending on their racial background. Caucasians have the highest chance at 97 percent, with Latinos at 80 percent, Native Americans at 77 percent, Asians at 72 percent and African-Americans at 66 percent.
Just this summer, Kobata’s bloodwork and a bone marrow biopsy showed that her red and white blood cell, platelet and hemoglobin counts have dropped to dangerously low levels. Under the care of Margaret O’Donnell, M.D., associate clinical director, Department of Hematology & Hematopoietic Cell Transplantation at City of Hope, she is now in the process of actively preparing for a bone marrow transplant, currently scheduled for early October. The good news is that her condition has not progressed to leukemia.
Kobata, who works in digital ad sales, was run against the registry again, and even after a decade of outreach, there was still no good match for her. Her brother Randy, however, is a half-match, and in the last 10 years “they have gotten better and better at suppressing the markers that don’t match,” Kobata said. In addition, “They are finding that any time a donor is related to the patient, it’s better,” she said.
And so, her brother will be her donor.
Even though she is facing several days of intense chemotherapy followed by the bone marrow transfusion, and then a weeks-long stay at City of Hope to recover, Kobata says she is ready.
“If the transplant’s inevitable, let’s just do it. I’d rather go in as strong as possible,” she said. “To have it finally happen and to finally have a decision about how we’re going to move forward, it is a huge relief,” she added. “This disease is so bizarre. You don’t feel sick, you don’t look sick, but they’re telling you you have a very serious, potentially fatal disease. You kind of feel like a ticking time bomb. Now, we have a path forward. I know it’s not going to be easy, but we are finally going to move on from this.”
That initial sense of relief was followed by “waves of scared, of angry, of anxious, of every emotion you can imagine,” Kobata said. “But I have such an incredible support system of my friends and family, and I just know in my gut that I’m going to be OK. Overall, I’m looking forward to doing this because I’m looking forward to moving on with my life in a healthy way.”
Kobata’s office, MaxPoint, is sponsoring a fundraiser at SoulCycle LA on Sept. 12. You can sponsor the ride by donating to #TeamKrissy. All of the funds raised will go directly to City of Hope so they can continue their work in research, treatment and education. “We thought this would be a great thing — it gives people the feeling that there is something they can do to help,” said Kobata, who hopes to raise $10,000.
Joining the bone marrow donor registry itself is easy. You must meet some health requirements and then make a conscious decision to help someone in need. The process starts with just a swab of the inside of your mouth and some paperwork. You have to be between the ages of 18 and 44 to register. If you are between the ages of 45 and 60 you may still register, but you have to do so online at BetheMatch.org.
Kobata, who just turned 35, is ready for the rest of her life to begin:
“All right," she said. "Bring it — let’s do this!”
, Thank you for supporting our mission of eliminating cancer and other life-threatening diseases! Make sure to check your inbox from time to time for the latest City of Hope updates and breakthroughs.
You may also be interested in