Forever Hopeful in Hunt for Bone-Marrow Donor

At an age when most kids are concerned about pimples, the prom and college entrance exams, Valerie Sun worries about scrapes and cuts.

Since being diagnosed five years ago with aplastic anemia, a rare disease that has left her unable to produce enough cells and platelets for her blood to carry oxygen and clot, the 15-year-old senior at Thousand Oaks High School has had a set of priorities very different from her peers.

“I look around at my friends and they’re worrying about school and stuff,” said Valerie, who skipped her junior year. “But I have to worry about my health, too, so it can get pretty hard.”

Valerie sometimes suffers painful headaches because of a lack of oxygen reaching her brain; she is often fatigued and would bleed uncontrollably if she were ever cut. But she hasn’t lost hope on a million-to-one procedure that might save her life.

Like 118 other Ventura County residents, the majority of whom are children, Valerie needs a bone-marrow transplant.

There are more than 60 diseases, such as leukemia and Hodgkin’s disease, that can be effectively treated with such transplants. Marrow is the soft spongy tissue inside the bone that constantly replenishes the body’s supply of blood cells.

If successful, transplants can either help boost the patient’s ability to fight a disease or can cure it altogether.

More than 2.8 million people are listed on the nation’s registry of possible donors, but the chances of finding a genetic match outside one’s immediate family are still very rare.

Next most likely to provide a marrow match are those of similar ethnic backgrounds. That makes Valerie’s search tougher, because there are a limited number of Chinese Americans in the national bone-marrow registry.

Yet, with the help of family and friends at her church, United Methodist in Thousand Oaks, Valerie is hoping for a miracle.

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Last month, church volunteers organized a fund-raising event to help pay the testing cost of $45 per donor. They had hoped to raise $4,000 but ended up with three times that.

Today, volunteers will be putting that money to use by holding a bone-marrow registration drive from 9 a.m. to 4 p.m. at the church, 1000 E. Janss St.

Anyone between the ages of 18 and 60 may volunteer for the free blood tests administered by medical professionals.

“I know that most likely nothing will turn up, but it’s important, because even if it doesn’t help me, it might help somebody else,” Valerie said.

Maybe somebody like Joe Haskin, a 44-year-old father of four in Westlake Village.

Haskin, whose bone marrow has been ravaged by lymphoma, knows his last hope is to find someone with a genetic match.

A transplant could conceivably extend his life long enough to let him watch his youngest son, 5-year-old Colin, grow up. Without the transplant, his prognosis is far less certain.

“It’s daunting,” he said about the odds of finding a donor. “But I’m not giving up. I’m hopeful that someone will turn up.”

To help bolster his chances, Haskin’s friends and family will hold a fund-raiser Dec. 7 at St. Jude’s Catholic Church, 32032 W. Lindero Canyon Road, in Westlake Village to help raise money to pay for the cost of testing people.

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Like Valerie, Haskin said he will be happy if anyone finds a match through the drive.

“I know it’s a long shot, but I’d feel fortunate if anyone found a donor,” he said.

Bone-marrow transplants have a reputation as unpleasant experiences that are painful for donors. But according to Dr. Neena Kapoor, clinical director for bone-marrow transplants at Children’s Hospital in Los Angeles, the procedure is not as bad as imagined.

A long needle is inserted into the hip bone, from which the marrow is extracted. Donors are usually under general anesthesia for the procedure, which can last from 30 minutes to two hours.

Recovery from the procedure varies. Some children are up and running within hours after the extraction, while older people might feel some pain for the first several days. The marrow will generally grow back within two weeks.

“There is some pain involved, but it isn’t anything that can’t be managed,” Kapoor said. “Besides, it’s about saving someone’s life, and donors don’t lose a thing.”