JA Woman in Desperate Search for Donor
After two matching stem cell donors back out at the last minute, Nancy Sakakura is back to square one.
When Nancy Sakakurda, 46, got the phone call this past January that a potential stem cell donor had finally been found for her, never-ending months of anxiety and devastation seemed to finally be coming to an end. But it was not to be.
By some miracle, a few months later another match was found for the Sansei mother of two teenage boys. Sakakura started preparing her body for the stem cell transplant that would save her from the disease ravaging her body. But just two weeks before the operation was to take place the second donor abruptly pulled out.
Now she is back to square one and this time around things have gotten a lot more urgent.
“It’s been a pretty tough road, especially the last six months,” said Sakakura, a former CPA who currently resides in Cypress, Calif. “It’s been the most difficult thing I’ve ever gone through by any stretch. It’s very critical right now. I need a donor now.”
Sakakura was diagnosed with MDS (Myelodysplastic Syndrome) in February 2004, a condition that does not allow her body to produce healthy blood cells. Since then she has had to get blood transfusions every two weeks, about 1 to 2 units of blood each time, in order to replenish her red blood cells. In some patients MDS progresses to Acute Myeloid Leukemia.
A former active mother and wife, Sakakura now gets winded by a simple walk up the stairs and the slightest movements make her muscles burn. She also admits to mood swings and being irritable more often.
Although some days are particularly bad, especially as the need to get another blood transfusion gets closer, Sakakura and her family have had to adjust. Her husband Mark has decreased his work hours and both he and son Scott, 17, have donated their own blood for the transfusions.
“I’m trying to help out, do whatever she needs,” said Scott, a junior at Cypress High School.
“It’s been tough,” said Sakakura’s mother Grace Kurisu, 78. “You wonder if you caused it. You wish you could trade places. I’m old. She has a family to raise.”
The Sakakura family and their friends are actively working to find another suitable stem cell/bone marrow donor for Nancy before her condition worsens. They are working with organizations like AADP (Asian American Donor Program) and A3M (Asians for Miracle Marrow Matches) to set up bone marrow drives throughout the state of California.
Asian Americans make up only a small number of donors on the National Marrow Donor Registry. According to AADP, nationally there are 398,000 AAs currently on the donor registry and only 30,000 Japanese registrants.
When AAs suffer from blood diseases it can take a person much longer to find a suitable donor and often a match is never found. And that’s what makes Sakakura’s case so devastating since two suitable donors were found.
“It was almost a miracle that Nancy found two matches and for both to say no was devastating,” said Cathy Gillespie, AADP executive director. “It’s important that people who register know there’s a life at stake. That they may be the only donor for the patient … Someone is going to die if you say no.”
Although Sakakura often wonders what made the two anonymous women decide not to go through with the procedure, she tries hard not to rush to judgment.
“I want to know why,” she said, but understands there could have been several factors that caused the donors to back out. “Most of all I want to educate them. All I need are stem cells.”
“I try not to be bitter … they don’t know my daughter,” said Kurisu. “But you can’t help but wonder, why? I wish they could have met each other.”
Both mother and daughter believe there are some generational and cultural beliefs within the AA community that may make potential donors hesitant.
“Because of cultural background there’s a hesitancy to get involved. The older generation is a little bit more reluctant,” said Sakakura. But she is hopeful the younger generations are more open to becoming donors. “Among the third or fourth generations there is a little more awareness, a willingness to donate.”
“There’s a cultural hesitancy to donate, they’re taught not to do this,” said Kurisu. “It’s a part of the culture that’s passed down. We need to educate and get the word out. It’s all about education.”
The procedure to donate stem cells is simple. The person donating the stem cells gets shots for one week so the stem cells are released by the bone marrow. The donor than heads to the hospital for about a five-hour procedure to transfer the stem cells to the patient. Afterwards the donor may experience flu like symptoms but there are no long-term effects.
AADP and A3M are working to encourage more AAs to sign up for the National Bone Marrow Registry, a procedure that lasts less than 15 minutes. First a small amount of blood is withdrawn from the thumb and than the information is entered in the national database. If a match is found a secondary screening is performed to verify the match. Once confirmed, the actual donation takes place.
For Sakakura a stem cell donor is needed immediately otherwise her condition will become fatal. Although she hopes to find a donor for herself, she also wants all minorities to come out to the upcoming drives.
“A lot of people out there are looking for donors, a lot of minorities are looking for donors,” she said. “It’s so important to get the information out, to get registered, and stay committed. You may be the only person who can save a life.”
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