After enduring a year’s worth of treatment for non-Hodgkin’s lymphoma, Paul Ota decided to fly home to the Bay Area to pick up his universal passport. A universal passport is a document that symbolizes a person’s goal to travel the world. He had been on the waitlist for one since before he was diagnosed with cancer, and he wasn’t going to let being sick halt his dreams. He didn’t tell his family about his plans to make the flight from Southern California because he knew they would be afraid to let him go.
“He wasn’t trying to live in this moment of having cancer. He was making his bucket list for things he wanted to do, places he wanted to go,” said Jonathan Ota, Paul’s younger brother. Despite knowing Paul was right about his family’s fears, Jonathan knew nothing could’ve stopped his brother from living his best life.
By spring of 2017 Paul had seen it all. Since his diagnosis in early 2016, he’d had multiple rounds of chemo and surgery, as well as experimental treatments in attempts to send his cancer into remission. A year prior, his doctor had suggested he and his family search for a bone marrow donor for a transplant as another possible approach to battling his cancer. Paul was multiethnic, half-Mexican and half-Japanese, which meant finding a marrow match was unlikely to be an easy task. Paul’s brother and sister were tested but weren’t matches for him, despite being perfect matches for each other.
Being unable to find a match, even between blood-related siblings, is a common problem among multiethnic patients who need bone marrow transplants. In order for two people to be a match, they have to have the same human leukocyte antigens, which can be thought of as special markers or flags in almost every cell of the human body. As people inherit HLAs from their parents, a potential donor might have a similar racial or ethnic background as the recipient.
Multiethnic people tend to have more complex tissue types than many monoethnic people, which means finding a match could be more difficult for individuals in this population. Many multiethnic people are also multiracial, like Paul. Within racial groups it is more likely that a person will find a match between ethnicities. For example, it is more likely for two Asian people of different ethnicities (i.e. Chinese and Korean) to match than an Asian person and a non-Asian person to match.
This can complicate finding a match even more, as only about seven percent of the U.S. population is multiracial.
Ota and his family used the Be The Match Registry, an international organization which manages the largest and most diverse marrow registry in the world, for their search. Through Be The Match, Ota was connected with the Asian American Donor Program and Asians for Miracle Marrow Matches (A3M), two branches of the organization that aim to help ethnically diversify the registry. Soon after the Ota family met Veronica Lases, the A3M Latino outreach and recruitment coordinator. Lases is also half-Mexican and half-Japanese.
“We are all finding out how mixed we really are; however, many are still not registering,” said Lases. She helped the Ota family hold registry drives in Southern California, as well as at his childhood church in Selma, Calif. She became close to his family and was dedicated to increasing potential multiethnic donors in the registry in Paul’s name. “It’s hard being mixed and knowing that if, heaven forbid, I were to need a match, I have no one.”
Despite many people registering on behalf of Paul’s journey, matches were hard to come by. In order to stay positive, he began to reach out to other cancer patients via social media. He wanted to inspire others to stay positive and live life to the fullest. Jonathan said when the hypothetical question arose of whether Paul would change being multiracial if he could in order to better his chances of finding a match, he stood firm in his unique identity.
“Cancer or not, he would never change himself in that way to prolong his life,” said Jonathan as he reminisced on his brother’s pride of their multicultural background. When Paul started college at the University of California, Berkeley, he joined the multiracial student group Hapa Issues Forum and took classes to learn more about his Japanese American heritage. He had grown up in a mostly Mexican American neighborhood and was excited to delve into the other half of his heritage. He loved how diverse the Bay Area was, and was able to meet other mixed Asian Americans like himself. Celebrating his multiracial background with his peers quickly became his new normal.
“He loved it,” said Jonathan.
It wasn’t until spring of 2017 that a partial match with Paul’s same blood type in the international database was found in Poland. His family was elated and Paul felt like he was the luckiest guy in the world. The day a patient is given new bone marrow is affectionately called their new “birthday” by the healthcare community. July 21, 2017 would be that day for Paul, experienced at City of Hope cancer treatment and research center in Southern California.
At first it seemed like Paul was on an upward swing after the transplant, and he was able to go home and recover. Eventually, though, he began to feel sick. He was suffering from graft-versus-host disease, a complication in which the body reacts negatively to foreign cells. He returned to the hospital for the last time in autumn of 2017.
Jonathan and his family members took turns spending time with Paul in the hospital as he battled the disease, along with a lung infection. Jonathan remembered how calm his brother seemed in the morning on the day he passed away.
“When the sun came out I remember him looking out the window a lot. He was feeling better that morning,” said Jonathan. It was one of his last memories of his brother.
Paul passed away Nov. 12, 2017, three days before his 41st birthday.
Though finding a match didn’t save Paul’s life, it was one of his few chances at survival. Jonathan continues to urge people, especially multiethnic people, to register as potential bone marrow donors. He says it can only better the chance of finding a possibly life-saving match for other multiethnic patients.
“In these types of situations, your ethnic background does matter. Cancer doesn’t discriminate,” said Jonathan.
Lases’ message is similar. To this day, Paul’s journey inspires her to register as many potential donors as she can, in hopes of finding as many matches as possible.
“You just never know who you might save,” said Lases. She stops by the cemetery Paul is buried in whenever she visits the Central Valley for work, and asks him for help with her new patients’ searches.
The last tweet Paul ever posted was on his new “birthday.” After updating his followers throughout his journey, he relayed one last message of hope:
“Day 0. Transplant day. Thank you for all your prayers and blessing. I am feeling hopeful, blessed and strong today.”