Bursting with happy energy, Monica Shek is flitting among her toys; twirling a Hula-Hoop, switching on a model train and rearranging stuffed animals--a snuggly bear, the toy sea lion she sleeps with and a windup parrot that croaks "hello."
His eyes following her around the room, Oliver Shek regards all this excited motion with a father's doting adoration. But a hint of apprehension lies behind his gaze, as if Monica were some rare vision that might disappear at any instant.
At the age of 6, Monica is nearing a crossroads in her struggle with leukemia, the disease that has ravaged her since she was 2 years old. Three times, doctors have battled the disease into remission. But ultimately, chemotherapy has failed to halt the growth of cancer cells. Now it appears that only a bone-marrow transplant can cure her. Without one, her doctor believes, Monica has five months--at the most--until medication fails to control the disease and she falls into a final, incurable relapse.
With no sisters or brothers, though, the chance of finding a donor who matches her marrow type are about 1 in 10,000, her doctor says. There are 1.3 million potential donors listed with the National Marrow Donor Program Registry, but only 56,000, or 4%, are Asian, says Jennifer Sugimoto of Asians for Miracle Marrow Matches, a recruitment arm of the national donor program. Even fewer are Chinese or Chinese Americans. Although it is possible to find a match among any ethnic group, marrow types are genetically determined and it is more likely to find a similar type within a patient's ethnicity.
A handful of preliminary matches have been found for Monica; more testing must be performed to see whether any of these is a perfect match.
Momentarily abandoning her playthings, Monica flings herself against her father, snuggling her face against his waist. Caressing the wispy hair that remains on her head after chemotherapy, Shek says softly: "After the diagnosis we treasured her more because we know there's no guarantee. We know that she might not be around too long."
Monica was found to have leukemia in August, 1990, while still a toddler. Her parents' shock and grief at the diagnosis were softened by the information that the cure rate for children is 80%.
After a hospital stay at Children's Hospital in Los Angeles, she began 2 1/2 years of outpatient chemotherapy. Her mother, Winnie, quit her job as a waitress to be a full-time caretaker to her ailing child.
"It's very tough for me," Winnie Shek says. "The hardest part was when I heard she had leukemia. I felt very bad, very sad."
The course of treatment was nearly over in July, 1992, when her physician, Dr. Judith Sato, detected cancer cells in her bone marrow, signaling a relapse.
Monica's second course of treatment combined chemotherapy and radiation, a more aggressive regimen that required intermittent hospital stays, Sato says.
Doctors and nurses, spinal taps and blood tests formed the backdrop of her childhood. Although she had some friends, her father says, the time she could spend with them was limited. Her immune system, weakened by chemotherapy, could not withstand microbes that would barely bring on sniffles in a healthy child. On a couple of occasions, she was hospitalized with fever, Shek says.
"Sometimes, when she was on chemotherapy she had no white cells at all," he says.
Despite the rigors of treatment, Monica entered kindergarten last fall. That time was the happiest in her life--her first glimpse of normal childhood. At the same time, she patiently submitted to the sometimes-painful procedures that sustained her family's hopes.
"She's real good about getting chemotherapy and oral medication," Shek says. "To her, it's part of her life. She knows she has to take it because she wants to get well. . . . That's all she knows. That she's sick and she may be able to get well."
Her parents and doctor preserve her hope by keeping her real chances of survival to themselves.
In May, Sato once again discovered cancerous cells in Monica's marrow--her second relapse. Even stronger medication put the disease into remission again, but at this stage in the disease, chemotherapy can only control the growth of cancer cells for a limited time. Sato says that after each relapse the cancer cells become more resistant to treatment. The longest anyone has survived this stage of leukemia without a marrow transplant is eight months, she says.
"Her prognosis is very poor," Sato says. "It's very unlikely that she can survive unless we can find a marrow donor."
Shek has been searching for a donor since then. He contacted the marrow registry in Hong Kong, as well as an Asian marrow-donor group in the United States.
"Seeing that my child is going to pass away, I feel extremely sorrowful, confused and angry," he wrote in a plea through the latter group. "Whenever we think that she is leaving us and think of the wonderful times we spent with her, we feel that there is no hope in life. We cry continuously. However, I said to my wife that we cannot give up."
Registered marrow donors take a blood test that measures three types of proteins that indicate marrow tissue type. The test remains on record, and if a patient with those same proteins needs a transfer, the donor is given a second blood test to determine if the match is complete. If the donor agrees to go ahead with the transfer, doctors extract a small amount of bone marrow from their pelvic bone, Sugimoto says. The procedure is of little risk to the donor and the marrow regenerates in three to four weeks.
On June 30, the Hong Kong registry notified the Sheks that they had found records of 19 preliminary matches, and the U.S. donor registry found four. But it may be several months, Shek says, before they locate the donors and learn if any fits Monica's marrow type.
Sugimoto says that because of the small pool of Asians in the national registry, chances of a match are still tenuous.
"There's so many different combinations of (proteins), we would need a million Asians on the registry in order for all Asians to have a good chance of having a match," she said.
People of Asian descent make up 10% of the U.S. population, Sugimoto said, but only 4% of the marrow donor registration. Reluctance to donate among Asians is partly due to a lack of education about the procedure, she said, and partly to cultural taboos against it.
"People, especially new immigrants, are not accustomed to donating any parts of their bodies," she said. "It's almost considered bad luck."
Shek, though, implores Asians to consider marrow donation, if not for Monica, for another Asian child who needs it. What might be feared as bad luck would be, rather, a fantastic stroke of fortune to his family.
"We just keep hoping that the cure is there," he said. "This is a very special thing. It comes from within you."