Vancouver woman struggled to find a bone-marrow transplant donor – a common issue for African Americans

Shona Carter’s relationship with her half-sister was mostly relegated to the internet until Carter got cancer.

Carter, a 47-year-old Vancouver resident, and Sadra Burris, 43, knew of each other growing up but didn’t really know each other. The half sisters, who share the same father, grew up in Indiana, but Carter relocated to Portland with her family before the start of high school. After that, the pair’s contact was mostly restricted to social media.

“We would kind of stalk each other,” on Facebook, Carter joked of their relationship.

Then in December 2017, Carter was diagnosed with acute myeloid leukemia, a cancer of blood and bone marrow. Carter’s two sisters weren’t matches with her, and when Carter posted on a Facebook family reunion page searching for possible donors, she didn’t get any hits. There weren’t any matches on Be the Match, the national bone marrow registry, either.

Carter wanted to ask Burris, who lives in Orlando, Fla., about donating but couldn’t muster the courage to reach out. Carter’s sister, Myisha, who knew Burris better, sent a message on her behalf. Burris replied she’d get tested, and it turned out that Burris was a partial match. It was enough to perform the transplant in April 2018.

“I was so relieved. I think I was in tears. I was hysterical on the phone. That meant saving my life,” Carter said. “She doesn’t really know me. She doesn’t have to do it. She can say, ‘No.’ It was a blessing. I’m forever grateful. How do you repay someone?”

A need for donors

Carter faced difficulty in unearthing a bone marrow transplant in large part because she is African American. According to 2017 statistics from Be the Match, 8 percent (800,000) of 12 million-plus donors were African American.

A combination of factors play a role in why it’s harder for African Americans to find bone marrow donors, and also blood and organ donors.

According to Be the Match, some ethnicities have more complex tissue types than others. African Americans fall into that category because of the diversity of their genetics. That means an African American’s best chance of finding a donor is generally from another African American, which can be difficult due to the lack of African-American donors.

“Most African Americans struggle to find a half match, and it’s not only because our genetics are complicated, but it’s also because there’s a history of African Americans fearing the medical system in general,” Carter said.

The U.S. has a deep and long history of unethical and criminal medical experiments on African Americans that stretches from slavery to more recent times.

Carter referenced Henrietta Lacks, who had cells taken from her body without consent in the 1950s, and the Tuskegee study of untreated syphilis in African-American men, where doctors misled hundreds of African-American men about the study’s purpose and didn’t provide them treatment for syphilis from 1932 to 1972, as two higher profile examples of mistreatment of African Americans by the medical community.

“Typically, it’s challenging to get African Americans to swab their cheek and put it into this registry” Carter said. “Even something as simple as giving blood, I think there’s a lot of fear there, and rightfully so.”

Carter wants to raise awareness around the fact that African-American bone-marrow donors are needed. Right now, African Americans have a 23 percent chance of finding an adult bone-marrow donor on the Be the Match registry. The second lowest match percentage is 44 percent for Asian or Pacific Islander; 46 percent for Hispanic or Latino; 57 percent for American Indian or an Alaska native. White people have a 77 percent chance of finding a donor.

“If you’re a person of color, these are the types of things we don’t have a chance to think about until something happens to someone in our family or to ourselves,” Carter said. “I’m a living testament to, ‘We can trust the system with these types of thing.'”

Healthy again

Carter has come a long way from her two-month hospital stay in winter 2018, when she decorated her hospital room with cotton balls to represent the winter weather she missed during a stay that robbed her of Christmas and New Year’s.

Carter listened to playlists of funk, R&B and hip-hop made by her friends and read books and magazines to pass the time. She drew a bullseye “C” on a white board in her room, and shot it with a Nerf gun — symbolic of beating cancer.

For treatment, Carter underwent three to four types of chemotherapy, full-body radiation, blood transfusions, platelet transfusions and doses of steroids. She concluded treatment in May, and she has returned to work as the vice president of programs with the Community Foundation for Southwest Washington. Right before her malady struck, Carter was set for a promotion. She returned to find the promotion had stuck, but that a new team had been hired under her in her absence, which increased her anxiety at first.

“I’m a new person with new energy, and I’m fuzzy because I have chemo brain, radiation brain and transplant brain,” Carter said. “I have new team members I have to meet, and not just in my team. You feel insecure a little bit. I’ve always been career-focused. If I’m not in school, I’m working. All of the sudden, I don’t feel like I’m up to snuff, and I feel a little intimidated and maybe a little insecure. People have been very generous. They understand, but I like to pull my own weight. I don’t want to feel like I’m getting special treatment, even though I know it’s OK to get special treatment.”

A new sister

Burris flew out to Portland to donate bone marrow to Carter at OHSU Hospital. She stayed for about 10 days, and mostly visited Carter’s family, since Carter was busy with treatment, but the half sisters did get time to share dinner and walk the Portland waterfront.

Carter was nervous it would be awkward, but over time the siblings’ bond became natural.

Burris likes how intelligent Carter is.

“She knows a little about everything,” Burris said.

Carter likes how Burris is adventurous.

“Everybody loves her,” Carter said. “She’s a well-loved individual, and I would hope people love me, too. Actually, I believe people love me because I’ve never seen such an outpouring as through this process.”

Even though they weren’t close growing up, Carter and Burris have similar mannerisms, voices and personality quirks, Burris said.

“It’s like we’ve been around each other forever,” Burris said. “We have a cousin who grew up more around Shona, and she would always tell me, ‘Oh, my God. You are so much like Shona. You sound like Shona. You act like Shona.’ I just took her word because I had no idea. I was like, ‘I don’t know if that’s a good thing. I don’t know if that’s a bad thing,’ but after being around her, I’m like, ‘I’m going to take that as a compliment.'”

Carter plans to visit Burris in Orlando later this year to meet her family. Carter’s treatment wiped out her immune system, and she has to wait until April 2020 to complete re-vaccination. After that happens, the siblings can tackle Burris’ bucket list dream by visiting Italy. Burris is a wine snob and wants to taste Italy’s best offerings.

Carter said she’s gained a sister through this ordeal. They said they’re excited for their relationship to grow.

“Sometimes we don’t know why things happen in life,” Burris said, “but when something like this happens, and I was able to help, it gives us a little reason why, maybe, things happen in our life.”