Nancy Sakakura shares the story of her long journey to find a bone marrow donor.

“Even a flu could send me back to the hospital. With anything, any little thing, any fever over 101, I’ve got to go back there again. I would not like to do that.”

In spite of all the difficulties she faces, Sakakura smiles and says, “That’s okay, I don’t mind that.”

“It’s minor compared to what I’ve been through,” she added. “There are a lot of little things that we stress over, and they are really just so minor, just almost nothing in the big picture, where you are talking about life and death.”

Sakakura and her mother Grace Kurisu

Born and raised in Orange County, this Cypress resident studied accounting at Cal State Long Beach and worked as a CPA for the County of Los Angeles until she became a mother of two sons. She was a typical Sansei who loved playing golf and watching her sons’ basketball games and occasionally worked at her husband Mark’s dental office in downtown Los Angeles.  But her life took a sudden turn when she was diagnosed with myelodysplastic syndrome in 2004, a condition that stopped her body from producing healthy blood cells. “It was devastating. I couldn’t believe it because I just felt good. I couldn’t tell anything was different. I felt more energetic than ever,” she recalled.  But her family doctor discovered that she had a low blood platelet count, and she was referred to a specialist at the City of Hope National Medical Center in Duarte, one of the leading comprehensive cancer centers in the United States. “I started out with just a low platelet count, but they knew that it was going to progress to leukemia. So I knew at some point I needed a bone marrow transplant,” she said. It was the beginning of her long, rough journey to find a possible match.

Courtesy of A3M Sakakura is joined by volunteers for A3M’s marrow drive at the Tofu Festival in Little Tokyo in 2004.

According to the Asians for Miracle Marrow Matches (A3M), the largest Asian Pacific Islander recruitment group of the National Marrow Donor Program, about 30 percent of patients can find a matching donor within their family.  The remaining 70 percent of patients must search national and international registries for an unrelated donor. In Sakakura’s case, all her relatives were tested, but none of them proved to be a match. She approached the A3M group, hoping to find a possible match, meanwhile, she and her family began volunteering for A3M by organizing several marrow donor drives.

“It wasn’t just for me but for all other people who needed a match, because the Asian population is low, and you need to get more people registered. And it was a good way to channel my energy and all the nervousness that goes along with illness,” she said.

Contrary to her seemingly increased energy and her participation in volunteer activities, her condition was certainly taking a turn for the worse. Since September 2005, she has had to get blood transfusions every week in order to replenish her red blood cells.

“I spent all day at the hospital, several times a week, but I had to, I didn’t have a choice. That was the only thing that we could do to keep me going until they could find a donor,” she said.

Her first chance for a transplant came in December 2005 when a suitable match was found. She went through many pre-operational tests and was ready to have the procedure in January 2006. However, at the last minute, the donor became “unavailable.”

“We don’t know what happened,” she said.  She could do nothing but look for another suitable donor. Luckily, she was able to find a new donor just a few months later, when another potential match was found. 

But, it happened again.

“She became unavailable after I’d already gone through all the pre-operation work. It was just devastating when it happened twice,” she said. “All of a sudden, they changed their minds, someone talked them out of it, or they didn’t pass some of the tests ... but we just don’t know why.”

Since it’s a voluntary process, donors are under no legal obligation and their personal information is kept confidential, according to the A3M Web site.

“If we don’t, it could set up a conflict. It could be a very difficult situation if someone changed their mind and they were contacted in the very beginning. They could be pressured.” said Michiko Kanenobu, Japanese Outreach and Recruitment coordinator for A3M.

Some statistics show about 60 percent of the API donors who are called for potential matches don’t go ahead with it, she added.

“It’s for various reasons. It’s not just because they changed their minds, but sometimes it can be very difficult to find the person. We just can’t reach them to notify them,” she said.

According to A3M, a last-minute change of mind may be fatal to some patients who have already started to receive intensive chemotherapy to kill diseased blood cells, which destroy the patient’s immune systems.

“I wasn’t angry but I was very disappointed, and I just wanted to know why. If I could know why, that’s okay, I would understand. But just not knowing why is a little disappointing,” Sakakura said.

The pre-transplant chemotherapy, she said, was one of the toughest times.

“Chemo was brutal. It was much worse three days of labor during childbirth,” she said. “That was the strongest chemo they could give me—10 or 11 days straight of two different kinds of chemotherapy.”

Side effects from the last chemotherapy were particularly painful, she described. “I’ve never felt a jaw pain like this before in my life. It was burning and hurt so bad ... my whole jaw and my mouth, it felt like it was on fire.”

But no matter how many painful treatments she had to go through, she never gave up. No matter how bad the situations were, she’s always tried to stay positive.

“Somehow I knew that I could get though my illness,” she said. “Every step back I had, which was a lot, I thought this was going to pass. So mentally I was right there with the illness, but I think I worried about my family more because it was hard for them, too.”

While Sakakura was staying at the hospital, her mother, Grace Kurisu, drove 40 miles each way from Westminster to see her at the hospital in Duarte every day.

“I worried about her driving down there every day, and I worried about my boys all the time because their teenage stage is tough,” she said.

But her two sons stepped up to look after the house while she was gone for four months. Andrew, 16, took care of the laundry, and Scott, 18, drove to buy groceries. They welcomed their mother back to a clean, well-kept house.

What surprised her most was the constant stream of support from family, friends, neighbors, the community and even from people she didn’t know. People took turns to bring dinner to her house almost everyday.

Community support didn’t just stop there. They not only helped her family, but also helped to save Sakakura’s life by donating blood.

“A lot of people just came to give me blood. Some people, I didn’t even know, did it weekly,” she said. “It’s overwhelming. I still can’t get over it. I have no way to thank these people.”

So whom would she like to thank the most? Sakakura answered the question by saying, “My donor. She’s my hero.”

In March 2006, her hero, a 23-year-old woman in Japan, was found through the hospital’s overseas matching program.

“After what happened to me with the two other potential matches, I was keeping my fingers crossed,” she said. “I was starting my chemo, and I was like, ‘Okay, my nurse from the City of Hope is heading to the airport, which is good,’ and I was just keeping track of everything.”

After a careful and long testing procedure, her much needed bone marrow was delivered right to her in May of 2006.

“She was not perfect, but she was a pretty good match for me,” she said. “I was lucky because I was a rare person to match in the first place.”

There are 10 human leukocyte antigen (HLA) markers for marrow/blood stem cell matches, and generally at least six HLA markers are required to operate a successful transplant. In Sakakura’s case, her last donor matched nine out of the 10 factors.

“There are no words I can express for what she did. Because of what she did, she saved my life,” she said.

What’s most difficult for her to bear is that probably, Sakakura won’t ever be able to meet her savior.

“All I know about her is she is 23, that’s all that I know,” she said.

While many of the U.S. donor centers, such as the National Marrow Donor Program, may allow donors and patients to learn each other’s identities after the first year of transplant, the identities of both parties can’t be revealed in Japan under strict confidentiality standards to protect the privacy of donors and patients.

“Sometimes [even U.S.] donors declinecontact because they feel they don’t necessarily need to have someone to thank them, or maybe they are humble people who really don’t want to ask for their thanks,” said A3M Coordinator Kanenobu.

Now, with much appreciation, Sakakura gets through the arduous recovery process—day by day, with careful steps.

“I’ve had ups and downs, but I’m doing a lot better now,” she said.

August and September were the toughest times, she recalled, when her platelet count suddenly dropped to almost zero, and she was sent back to the hospital to receive an emergency platelet transfusion.

“We didn’t know what was happening,” her mother said. “It was all of August that we had to go to the hospital.  We spent from 8 in the morning ‘till 6 at night over there.”

“That was just scary. But, in my mind, I was like, ‘It’s going to pass, it’s going to pass,’ so I just knew it was going to be okay, and it was,” Sakakura said. “I have good platelets now. It’s a steady climb, and that’s okay too because I don’t want to be jumping around. Rather, I just want it to go up slowly.”

“It’s just a little bump in my life that’s all it is, and a year from now, I’m like ‘oh my god remember when...?’ Everything will be a memory, and hopefully back to normal.”

Now, she goes to see a doctor every two weeks.

“But, pretty soon it’ll be once a month,” she said. 

Every time she visits the hospital, she logs on to her blog site (nancysakakura.blogspot.com) and updates her condition. Sakakura started the blog soon after she was diagnosed with the illness as a diary of her fight against the disease.

“It’s a pretty good way to keep people informed because otherwise, my family would have a dozen of calls every night,” she said.

While recovering from her operation, Sakakura writes down all the things she would like to do in her calendar.

“I’d like to go to Vegas. I’d like to get back to golfing. But, I don’t really have a big plan. I just want to get back to where I was,” she said. “I just cherish everyday, especially with the kids, because I know they’re not going to be in this house forever. I am just happy to see them everyday.”

Sakakura is always willing to participate in media interviews and tell her story to community members in order to get the word out.

“I just want to encourage people to register to be a donor and help save lives because somebody sure saved mine,” she said. “I would be very sick right now if this donor hadn’t come through—or I might not be here. When they found me a donor I was just at the point where it was turning into leukemia. I was lucky. It was really, really close.

“I’d like to get other people to stay committed to the process because once they get called as a donor, someone is relying on them with their lives.”

Now, looking back at her two years of fighting the disease, she explains how this experience has changed her life.

“It made me strong. It made me appreciate things and really see what’s important in life, and now I really know what that means,” she said.  “A lot of good came out of it, but it was tough. I can look at the bright side and know that the hard stuff is behind me, and I’m just going to look forward.”