BONE MARROW REGISTRY A LAST HOPE FOR SOME, BUT STRUGGLES TO FIND DONORS
Waiting, hoping for a lifeline
By Mike Gordon
Advertiser Staff Writer
The blood was late, so Jennifer Villanueva waited quietly in her hospital room for her transfusion. She fidgeted a little, but the hard part was over; a 2-inch needle already pierced a vein in her left arm. It was attached to a tube with a valve on the end and affixed to her skin with tape and a sleeve of webbed cloth.
Villanueva, a mother of two young children, was diagnosed with leukemia in June. Ever since, the 32-year-old Maui woman has traveled to The Queen's Medical Center on O'ahu for monthly chemotherapy treatment for needles and nausea and waiting for good news.
"I have good people around me," she said, her face a blank slate. "They have been helpful in trying to make me feel that there is still hope for me."
When the blood arrives, it will help Villanueva recover from the debilitating side-effects of chemo, a regimen of drugs so powerful and indiscriminate that it kills the body's healthy cells as well as cancer cells.
Chemo is not her cure, though.
What Villanueva needs, what she prays for at the end of every day, is a bone marrow transplant. But after a three-month search for a match from her sister to the 7 million people with the National Marrow Donor Program a donor hasn't surfaced. So Villanueva, one of a handful of Hawai'i patients and an estimated 6,000 nationwide who need this transplant, lives in limbo.
It takes stamina to be this strong.
Like many Hawai'i patients who need a transplant, Villanueva, who is Filipino, must find a donor in a pool of minorities who have not signed up in huge numbers. She has had to stop working at Maui Economic Opportunity, where she helped families in its Head Start program. And she has had to find her courage.
From the very beginning, when Villanueva was surrounded by worried family and physicians, she has struggled with fear.
"I honestly thought that was it for me," she said, her bravery giving way to tears. "I started to question what I did wrong in my life. I just kept saying: I'm not ready to go. I'm still not ready to go."
WHEN ALL ELSE FAILS
When they agree to help, donors with the Hawai'i Bone Marrow Registry are told the survival rate for patients is about 50 percent. The rate does not discourage people. Since it began in 1989, it has found 271 donors.
Currently, the registry maintains a list of 68,000 potential matches and holds donor drives nearly every weekend, and sometimes more often than that. But its ranks are challenged.
Between 2003 and 2007, the registry added 13,941 potential donors, said Renee Chung, the registry's donor program manager. In 2007, though, 72 percent fewer donors signed up than in 2003.
And the registry also faces an aging pool of donors who become ineligible when they turn 61. Over the next five years, the Hawai'i registry will lose more than 9,000 people due to age, Chung said.
No one at the registry can say exactly how many Hawai'i residents need a bone marrow transplant. Hospitals and doctors feel such information is too confidential to share, said Roy Yonashiro, the organization's recruitment specialist.
"I don't know about all the cases now because a lot of the patients don't want to go public," he said. "Most of them check within their own family first, but not everyone has a sibling to choose from."
Only 30 percent of patients find a match within their families. And insurance typically covers testing for no more than two siblings, he said.
Patients usually turn to the registry when everything else has failed. Often, their insurance coverage is wiped out, too.
"When they come to us, they are pretty much at the end of the line," Yonashiro said.
SEEKING LIFESAVERS
As his wife battles cancer, Mike Villanueva has felt his strength being tested, and there are times when the 38-year-old engineer feels he is failing. Often, his greatest moments of frustration are when Jennifer is suffering the side effects of chemotherapy.
"When I am holding that pan that she is throwing up in, it's hard," he said. "I am trying to rub her back. Sometimes the nurse is there, but for the most part they are helping other patients. I am holding her. She is hunched over. It's a helpless feeling, that you can't do anything."
But for all his doubt and he has been beside her during every stay at Queen's, sometimes sleeping on a chair in her room Mike Villanueva has found courage in unexpected places. Last month it happened at the Maui County Fair during a four-day drive for donors who are willing to undergo a surgical extraction of their bone marrow.
"I was out there every night trying to approach people as they were walking by," he said. "It was very hard. It was out of my comfort zone."
He felt like a salesman and struggled to find enough nerve to ask strangers to save his wife's life. In his heart, he wanted them to say yes even though he understood why they might say no.
"It's not like giving blood," he said. "It's a lot more commitment to do it. I know it's hard."
But 600 people signed up.
AN UNTAPPED RESOURCE
Waiting for a donor can be as agonizing as the treatment.
"More than any other time during the course of your disease, you are conscious of the fact that the clock is ticking," said Dr. Randal Wada, an oncologist who serves as medical director for the Hawai'i registry.
Most patients know the time they have to find a cure is short, months rather than years, said Wada, a researcher at the Cancer Research Center of Hawai'i.
"It can be pretty crushing that in a national registry of 7 million people there is not one person who matches you," he said. "What I tell them is that there are thousands of people actively involved in recruiting more people to these registries every single day. The total pool of donors is growing and there is always hope that something will turn up."
Hawai'i's widespread ethnic and racial mixing is both blessing and curse. It has the potential to save lives all over the world "It is a great untapped resource," Wada said but only if registry officials can increase the number of minority donors. Because tissue types are inherited, patients are most likely to match someone of their own race or ethnicity.
Wada concluded that a lack of awareness is a factor because registry officials have found donors among people who had not previously grasped its importance, Wada said.
"Not everyone understands how dire the need is," he said. "It is challenging to get this on people's radar."
That goes for oncologists, too. A chief problem for patients who must turn to unrelated bone marrow donors is that their doctor may see that as a last resort, Wada said. The cancer and the treatment have taken their toll by this point, increasing the risks.
"If there was an appreciation that this therapy was not a bad option and maybe even a front-line option, they might be referred earlier when their response might be better," Wada said. "This stuff actually works."
WAITING GAME
The list of Hawai'i patients waiting for the registry to find a matching donor is never very long. There were four this summer. Beyond their presence on the list, they had little in common except this: They know what it's like to end each day without having found a donor and to worry that if one does come, it might not work.
Sarah Ruiz, an 18-year-old Mililani girl diagnosed with leukemia in June 2007, never imagined a need for a transplant until a year into her treatment. She had suffered through chemotherapy that nearly killed her twice, but stomped her cancer into remission. Then the leukemia came back a few months later.
This summer, her doctors planned on two rounds of chemo, followed by a transplant, but she's already preparing for her fourth round of medication. Until Ruiz recovers, she can't do much, including classwork at Mililani High School.
"We didn't know that it would be a long process," she said. "We thought I would have a transplant right away. We waited for my second chemo to be done and then we found out we didn't have a match. That is when we thought about doing donor drives."
Her treatment takes five days to complete, then two weeks of recovery that must be done in a hospital, tethered to blood or medication the whole time.
"I don't want to do this for the rest of my life," she said.
For Michele Makinney, a 48-year-old Kane'ohe woman with non-Hodgkin's lymphoma, a bone marrow transplant from an unrelated donor scares her so much that she really doesn't want one.
"It is a dilemma I am facing right now," she said. "But I have been assured that until I enter the hospital I don't have to make a decision."
Makinney's cancer has returned twice since her diagnosis in 2000. It was initially treated with chemotherapy and when it came back, five years later, with a transplant of her own blood cells. Then her cancer returned last spring. She wasn't even feeling sick. It just showed up during a regular check-up.
"My oncologist told me there was no treatment available for me in Hawai'i," she said. "I freaked out for a while."
At the last minute, she was put on a clinical trial at City of Hope in Duarte, Calif. Problem is, the medication is only approved for use in California. If she wants to recover and return to Hawai'i, where Makinney was born and raised, she needs a transplant from an unrelated donor.
The transplant could happen this month, triggering her biggest fear: That the donor marrow will not be a good enough genetic match, prompting it to view her body as foreign material that must be destroyed. The condition is called graft-versus-host disease.
"There is a lot of risk involved, and every single doctor has been very open about the risk involved," she said. "Nobody is hiding any secrets. Yes, people do die from transplants."
In September, Leilani Emosi's family decided it couldn't wait any longer for the registry to find a donor.
She had been diagnosed for a third time. She had already reached her lifetime insurance benefits of $1 million. And her parents one still working and one having quit to care for her had sold the family home because they couldn't afford to keep it.
Emosi, a 19-year-old student at Leeward Community College, had battled leukemia since she was 8. It came back when she was 14 and again when she was 17. Her oncologist said the only option left was a bone marrow transplant. But because her ethnic make-up is so rare Samoan/Caucasian/African-American a match proved impossible to find.
So the 'Ewa Beach family flew to Johns Hopkins University in Baltimore. On Oct. 1, Ese Emosi donated marrow that matched half of his daughter's marrow. His hip bones, where the marrow was harvested, were so hard that it took doctors an hour-and-a-half to saw into them with special needles.
"He was so happy and proud," Emosi said. "It feels like we are closer."
Her recovery is going well, but Emosi will have to wait until March before she can go home.
FINDING STRENGTH
The blood B positive and as thick and red as tomato sauce dripped slowly from its plastic bag and into Jennifer Villanueva. It chilled the needle and stung her arm.
Arriving with little fanfare except a pair of diligent nurses, the blood should boost Villanueva's strength so she can endure two more chemotherapy sessions.
She stared at the blood, which hung from a 6-foot pole. The transfusion will take nearly five hours to complete.
Sometimes, she wonders whose donation is helping her, if just for a little while. But she tries not to think about the greater journey she is making.
"I just go home after treatment and live my life," she said. "Every day, I try to enjoy what is in front of me. And I pray a lot that something good will happen."
Reach Mike Gordon at mgordon@honoluluadvertiser.com.