By Stacy Nguyen
Northwest Asian Weekly
Last week, the Do family was driving around Seattle with Randy Yamanaka, a man that they have seen sparingly over the years, but one they’ve avidly kept in contact with through letters after their first meeting 15 years ago.
The Dos and Yamanaka were debating over whether Luke Do, 16, should get a haircut before speaking with press at the Seattle Police Department (SPD) headquarters later. Luke insisted that he didn’t want a haircut, but the debate still flipped back and forth.
“And I was thinking, isn’t it glorious that 15 years after what happened, we can discuss something as mundane as a haircut?” said Yamanaka, who is a retired SPD lieutenant.
In 2000, Sarah Gaskins and Lam Do, both physicians, had their first child — a son that they named Luke.
“And [seemingly] overnight, he got sick,” said Do. When Luke was 18 months old, Do noticed that his son’s spleen was enlarged.
Gaskins, who is half Japanese and half English-Irish, and Do, who is Vietnamese, were told by another doctor that their son had juvenile myelomonocytic leukemia, a serious chronic leukemia that affects children 4 years old and younger, and would die in six months to a year without a stem cell transplant.
The couple was also told that — due to Luke’s mixed-raced background — the chances of finding a marrow donor match was slim to none.
According to Be the Match, the U.S. National Marrow Donor Program, human leukocyte antigen (HLA) typing is what determines a match for a marrow transplant. The body’s immune system uses these protein markers to know which cells belong in the body and which don’t. Best transplant outcomes occur when a patient’s HLA and a donor’s HLA closely match. That is — the respective immune systems have a higher chance of not seeing each other as foreign.
According to the Seattle Cancer Care Alliance, HLA typing, while hinging on ethnic ancestry, is also very complex; there are more than 2,500 known HLA markers. Siblings have only a 25 percent chance of an HLA-identical match — and about 70 percent of patients who need a transplant will not have a fully matched donor within their family.
Gaskins was already pregnant with Christine, Luke’s younger sister, when Luke’s diagnosis came in. They learned that Christine was not an HLA-identical match to Luke. Thus, the Dos’ health care team contacted the National Marrow Donor Program to find a match outside of the family.
Leukemia and ethnicity
Leukemia, a blood cancer, is the most common childhood cancer, affecting about 3,500 children in the United States. It also affects 44,000 adults annually. It kills about 50 percent of diagnosed adults and 20 percent of diagnosed children, according to the Institute for Justice.
Currently, a search on the Be the Match Registry includes more than 22.5 million potential adult donors and more than 600,000 cord blood units. At any given time, there are 7,500 Americans actively searching the registry for a match — yet only 2 percent of the population is on the registry. Additionally, a significant number of those on the registry either cannot be located or will not donate when asked to do so. Sixty-five percent of whites will donate when asked, compared to 47 percent Latinos, 44 percent Asians, and 34 percent Blacks.
Furthermore, while whites will find a donor about 75 percent of the time, there exists an ethnic and racial disparity.
Latinos find donors on the registry about 45 percent of the time, Asians 40 percent, and Blacks 25 percent. Those who are multiracial, like Luke, face even smaller odds.
A 2012 study by the University of Pittsburgh School of Medicine, published in the journal Blood, found that the reluctance to donate stem cells or marrow — or backing out when contacted to donate — within communities of color is often due to cultural or religious beliefs, family pressures, or mistrust of the medical system. Worries that the donation process is painful is also a factor in reluctance within communities of color.
Fifteen years ago, then-sergeant Yamanaka, a third generation Japanese American, was contacted by the registry, stating that he was a potential match for a baby in San Jose with leukemia. Yamanaka had joined the registry six years prior.
Marrow donation is a surgical procedure that takes place in an operating room, in which the donor is anesthetized during the procedure — 96 percent of the time, the donor is under general anesthesia, which means he or she is unconscious during the procedure. A needle is then inserted into the donor’s pelvic bone and liquid marrow is extracted — about 1 to 5 percent of the donor’s total marrow. The marrow will replenish itself within four to six weeks after a donation. Nominal effects post-donation may include a couple weeks of soreness, fatigue, headaches, or bruising at the incision site.
“Lam and Sarah kept a journal [during that time],” said Yamanaka, “which I read later. What they said was … that they had been through so much that they didn’t believe that the transplant was going to happen until those two bags of [my] marrow were in the room, [so] that they could transplant them into Luke. They said that these two bags looked a lot like blood. Now, they’re both doctors … [and they wrote that, visually,] blood and marrow are almost identical. You can’t really tell them apart.”
“I found that interesting,” said Yamanaka. “I’m not sure why.”
When Yamanaka was asked to donate his marrow, he would have had to use his vacation time in order to do so. His request for paid leave of absence from work was denied. He didn’t think it was right — and his first act in challenging the system was to write a letter to then-Gov. Gary Locke.
Yamanaka ended up using his vacation time for the donation anyway — five days — because time was of the essence.
On March 1, 2002, the Seattle City Council passed a bill allowing for paid leave for government employees for these kinds of donations. It was the same day Luke received Yamanaka’s donated bone marrow at Stanford University, according to a 2006 report from The Seattle Post-Intelligencer. This kind of policy change trickled up — to state government while Locke was still in office, additionally influencing California policies.
A life after
“We always talk about hope,” said Yamanaka. “That’s always important, to keep hope. [But] what is hope? What does it look like? Fifteen years ago, what it looked like was two bags of blood dripping into an IV, that infused Luke with that spark of life.”
“Randy saved Luke’s life, and we’ve all been able to watch Luke grow up and thrive in the last 14 years,” said Gaskins. “We saw him graduate kindergarten, play soccer, sing in the choir, have multiple birthday parties, go to Disneyland, and hang out with his sister. He’s now a young man in high school. The point is that Luke was given a chance to have a life. We would’ve missed all this without Randy. I can’t imagine what life would be like if my son was not here.”
“I wanted to thank sir Randy Yamanaka for saving my brother’s life,” said Christine. “Without him, I would not only be missing a brother, but also my best friend.
“I’m very thankful to Randy for these 14 years that I’ve had,” said Luke. “I wish I can just — just thank you.”
“Just by joining [the registry] — believe me, I knew the day I joined that I had done something special,” said Yamanaka . “I didn’t know how special, but I knew.”
For more information or to join the registry, visit bethematch.org.
Stacy Nguyen can be reached at firstname.lastname@example.org.