For Dara Lindsay, relief comes in those rare moments when she can ride a horse near her rural Loudoun County house. For Suzanne Green, it's in the quiet prayers she recites while threading her way through traffic from her Prince George's County home to her job in Washington.
Each woman is coping with the stress of a young daughter's leukemia and the desperate search for a compatible bone marrow donor who can save a life. Although the mothers come from different backgrounds, they share a great deal: pain, vulnerability, occasional resentment and much hope.
This is a tale of two families caught up in a national medical lottery. The numbers tell part of the story: The odds of an unrelated person having bone marrow that can help cure a patient suffering from leukemia, a form of blood cancer, are roughly 20,000 to 1.
As registers listing potential donors and the specific characteristics of their marrow have expanded, about one leukemia patient in five who needs a transplant is now finding an apparently compatible donor in time. About 60 percent of the operations are successful.
Those statistics leave families such as the Lindsays and the Greens in anguish. Do they keep their pain private, or do they reach out publicly in hopes of finding a savior?
"Nobody can understand what you're going through," said Lindsay, whose daughter, Jacqueline, nicknamed "Jackie," is 2.
"Some days it's just like, how am I going to make it?" said Green, mother of 5-year-old Jocelyn.
Jocelyn, who wants to tap-dance and yearns for a birthday party next month at Chuck E. Cheese pizza parlor, is receiving chemotherapy, and her hair has grown back after an initial loss. Her best chance of finding acceptable marrow, a source of healthy blood cells, is from a black donor, but minorities are underrepresented on donor rolls, according to the two major national donor organizations.
The effort to find a related donor for Jocelyn was cut short because the adoption agency that placed her with the Green family would not open confidential records, Green said.
Jackie, who is partial to Lifesavers and her grandmother's lap, is receiving regular chemo- and radiation therapy. Her hair is gone; she's unable to nap because of the drugs. Even if a donor is found, her disease must go into remission before she can receive the new marrow.
There have been highly publicized transplant successes and failures in the Washington area and elsewhere in recent months. The lists of people willing to donate some of their pelvic tissue to save a life have almost doubled since Washington resident JoAnne Johnson lost her public struggle to live last February. Bethesda resident Allison Atlas is recuperating from the potentially lifesaving operation she underwent in August when her mother donated bone marrow to her. Similar dramas have been played out in other communities.
For each family that goes public about its plight, dozens of others suffer in silence and helplessness while waiting for the right person to volunteer for the blood test, according to Liz Quam, a spokeswoman for the National Marrow Donor Program. "Most families are overwhelmed," she said.
Families of leukemia victims too young to speak for themselves feel the greatest strain. The parents "must decide if it's appropriate to slap a kid's face on a poster . . . in hopes of finding a needle in a haystack," Quam said.
Many families lean heavily on relatives or friends to coordinate campaigns to have more people's marrow typed and to raise huge sums of money to pay for the tests, which run as high as $75 each.
If a compatible donor is found for Jackie Lindsay or Jocelyn Green, it could well be someone from a distant community who has never heard of either girl. But that doesn't stop the Lindsays and Greens from trying to do what little they can to improve the odds.
Nearly once a day, on average, a U.S. leukemia patient receives a marrow transfusion from a related donor, and another patient obtains the tissue from an unrelated benefactor. Ironically, testing drives run on behalf of Jackie and Jocelyn have each identified a likely donor for a leukemia patient in another state.
Corporate sponsors are helping to swell the two national marrow donor registers, which maintain separate lists, but it isn't happening fast enough for Dara Lindsay and Suzanne Green, who occasionally run into each other while their children are being treated at Georgetown University Hospital.
Each mother said she feels resentment that the family burden is so heavy. "In a situation like this I shouldn't have to" seek donors and funds, said Dara Lindsay, who has two other young children and whose husband works long hours. "If there was no way the community could help, I wouldn't be talking to you," she told a reporter.
Suzanne Green, who, like her husband, works at the Justice Department, agreed.
"I really didn't want to go public" about Jocelyn's disease. "I'm a private person," she said.
In February, JoAnne Johnson found a compatible marrow donor at a time when she was too ill for a transplant.
Green recalls running into JoAnne's father at Georgetown University Hospital the month before as he was going to visit his daughter:
"He told us, 'Don't wait -- search.' "
WHERE TO CALL
The following are telephone numbers to call for information about taking a blood test and joining a register of potential bone marrow donors:
National Institutes of Health, Bethesda: 301-496-0572
American Red Cross, Baltimore: 301-764-4619
National Marrow Donor Program, St. Paul, Minn.: 1-800-654-1247
American Bone Marrow Donor Registry, Mandeville, La.: 1-800-7-DONATE
For information about helping Jocelyn Green's family, call 703-691-2970
For information about helping Jacqueline Lindsay's family, call 703-752-5814