Holding on to hope: As 29-year-old Heather Lynch battles leukemia, she and her Ladera family search far and wide for a bone-marrow donor Holding on to hope: As 29-year-old Heather Lynch battles leukemia, she and her Ladera family search far and wide for a bone-marrow donor (December 01, 2004)

By Rebecca Wallace

Almanac Staff Writer

A face in a crowd. A man riding by on a bicycle, a woman piloting a plane overhead. Someone standing on the corner waiting for the light to change.

Any of these people could be the person Heather Lynch is looking for. She just needs one.

By her own admission, she's having a rough day. Diagnosed with acute lymphoblastic leukemia (ALL) in October 2003, the 29-year-old is now in remission but has been slowed by an infection and several high fevers.

Ms. Lynch's voice is tired as she speaks in her room at Stanford Hospital during a November 23 interview. She pauses for a drink of water, but keeps pushing through her story: how she had felt fatigued and had trouble breathing but didn't know what was wrong. A chest X-ray gave no answers, but blood tests did, showing she had ALL, a cancer of the white blood cells.

Undergoing treatment, Ms. Lynch achieved remission once but then relapsed in July. She's now in remission again and turning her attention to an abiding hope for survival: that a bone-marrow donor who is a close match will appear, and she'll get a transplant.

"I take it day by day," she says. "I hope that there's that one person out there who can change my life."

Family members, including Ms. Lynch's brother, Billy, have been tested, but none is a close-enough match, says Ms. Lynch's father, Bill.

In addition, about 120 employees at Siebel Systems, where Ms. Lynch is a senior manager in business development, gave blood, but no potential donors were found.

"We're trying everyone," Mr. Lynch says. "We're beyond the sympathy. This is a battle, and we're trying to win the battle."

The comfort of home

Although Ms. Lynch has an apartment in San Francisco, she's back living in the family home in Ladera, where she grew up. Because of her illness and the demands of treatment, she hasn't been able to work since her diagnosis, she says.

The chemotherapy has been notably hard on her immune system, making germs an ongoing risk, she says, adding, "I have to wear a mask when I go out."

But there's something comforting about being back in the community where she took dance lessons at the Menlo Park Dance Academy, attended services at Our Lady of the Wayside Church in Portola Valley and graduated from Menlo-Atherton High School.

Ms. Lynch says the mothers of her childhood friends provide welcome support to her mother, Linda. And her friends from her college days at UC Berkeley are always there for her. "That's what really keeps me going," she says.

As the Lynches travel this grueling road, they're encouraging everyone they know to become part of the National Marrow Donor Program, a nonprofit group that reportedly has facilitated some 20,000 transplants by finding matches between donors and patients.

Bill and Linda Lynch are circulating a "chain letter or chain email" titled "Marrow Drive to Save Heather's Life," with a photo of Ms. Lynch with long blond hair and a cheerful smile.

For a marrow or blood-cell transplant to take place, there must be certain matching tissue traits. These traits are inherited, so "a patient's most likely match is someone from their own racial or ethnic group," according to the National Marrow Donor Program's Web site.

The need is particularly high for donors who are Native American, Hispanic, black, Pacific Islander or of mixed race, the Web site states.

Ethnicity may be a reason the Lynches are having trouble finding a match, Mr. Lynch says. Ms. Lynch, who is Caucasian, had a great-great-grandmother who was Native American.

The donation process

As Ms. Lynch battles infections at Stanford, David Kison is up and around in San Jose -- with some soreness in his lower back, where bone marrow was removed with a needle.

Mr. Kison, 37, donated bone marrow on November 18 through the Stanford Medical School Blood Center. He sounds pretty perky a few days later, despite having undergone general anesthesia and being "a little green in the gills" shortly afterward.

"It's a little bit of discomfort for a couple of days," he says.

The process of becoming a donor begins by donating blood at a donor center such as Stanford, which performs tests on the blood and then forwards the information to the National Marrow Donor Program to look for matches with patients worldwide, according to the Stanford center's Web site.

When a preliminary match is found, the donor is asked to give more blood for further testing. If compatible, the donor then makes the final decision whether to donate.

These days, there are two ways to donate the stem cells found in bone marrow and blood.

There is the traditional way, in which bone marrow is removed through a hollow surgical needle inserted repeatedly into the iliac crest, or back of the pelvic bone. This is done under general or local anesthesia and is the method used with Mr. Kison.

Donors can have a sore lower back for a few days afterward, and some feel fatigued and have trouble walking at first, according to the National Marrow Donor Program. The donor's system typically replaces the donated marrow completely in a few weeks, program officials say.

Sometimes, though, donors undergo an alternative process. It's called peripheral blood donation, and involves harvesting stem cells from the blood. Blood is taken from a donor's arm and run through a machine that removes the cells, in a process that typically takes four to six hours.

"It is a stem cell transplant, no matter how the cells were collected from the donor," says Diane Hill, who has worked as a marrow-donor coordinator at the Stanford center for about 17 years.

The team caring for the recipient makes the choice of which method is needed, Ms. Hill says. Many factors determine that decision, such as the patient's age or particular condition. Transplants also go to people with other diseases such as lymphoma and aplastic anemia.

"Everyone who signs up for the program must be eligible for and willing to do either procedure," Ms. Hill says. About 50 to 60 percent of donors end up using the peripheral blood method, she says.

Eligibility requirements include: being between the ages of 18 and 60; being free of auto-immune diseases, cancer and asthma; and having normal weight.

Whatever method is used, coordinators are there to inform donors and hold their hands, Ms. Hill says.

Donors don't learn the identities of the recipients right away, but both parties can sign a release form to allow them to contact each other a year after the transplant. Donors also get periodic updates on the patients' health.

At this point, Mr. Kison says he knows his recipient is a man in an advanced stage of leukemia.

"I am really curious to find out how he's doing," he says, then adds that he hopes others will join him in donating.

"How could you say no to potentially saving someone's life?"

How to donate marrow

Locally, residents can register as a donor at the Stanford Medical School Blood Center at 800 Welch Road in Palo Alto. Donor appointment request forms and details about donating are online at http://bloodcenter.stanford.edu. Or call 723-5532.

Other information about becoming a donor can be found on the National Marrow Donor Program's Web site at www.marrow.org.

Information about acute lymphoblastic leukemia (ALL) can be found on the Leukemia & Lymphoma Society's Web site at www.leukemia-lymphoma.org.

On-line resource

A nonprofit organization, Can Do Coalition, has been created to use the Internet to encourage people to donate to bone-marrow, stem-cell and cord-blood registries. Brett Hine, the son of Almanac managing editor Richard Hine, is the executive director.

Through the Web site, CanDoCoalition.org, people can read up on the registries and spread the word to others. They can also help a sick child receive a free gift.

E-mail a friend a link to this story.