1997 Annual Report
Jay Li
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An anonymous man in Singapore and 3-year-old Jay Li of Palo Alto have never met. But Jay is alive today thanks to this man--and because a bone-marrow transplant in September, 1997, was successful.
"We are happy but we worry for the future," Jin Zhu, Jay's mother, says. "It's a long time until we can say he's cured."
The Li family's ordeal of love, hope and anxiety began when Jay, at 16 months, became acutely ill. On-call PAMF pediatrician Frederick Lloyd recognized symptoms that could indicate leukemia, a blood-related cancer--later confirmed by tests. For 10 months, Jay underwent chemotherapy treatments at Stanford University Hospital, then began taking oral cancer drugs at home.
The Lis purchased a new home: "We wanted to give Jay a safe environment during his treatment," Jin Zhu says. But shortly before they started to move to the new house, tests showed the leukemia was back. "The prognosis was very poor,"Jin Zhu recalls. She left her job as a chemist while her husband, Gangqiang (pronounced gungchung) Li, continued as a physicist at Hewlett-Packard.
With repeated chemotherapy, Jay was given a 5 percent chance to survive. A bone-marrow transplant would improve his chances--"but it is difficult for Asian Americans to find a donor," Jin Zhu notes. Of 3.2 million donors registered in the National Bone Marrow Registry program, only 5.5 percent are Asian/Pacific Islander--so the odds of a match for Jay did not look good.
"There was a race with time. After relapse you have to do the transplant within two to three months," Jin Zhu recalls.
The first international search found 80 donors who came close, with four antigens (immune-response agents) matching--six matches are needed for a "perfect match," where the body would easily accept the marrow. A six-match donor existed but was unavailable.
A "formal search" of the 80 prospects, requiring a more precise blood test to determine for certain whether the other two antigens matched, was needed but was not covered by their health plan. The Lis sold their new home to cover expenses--even though "the doctors told us the chances were very small to find a match for him," Jin Zhu recalls.
There was a second hope: Jin Zhu was pregnant with her second child, creating the possibility of an umbilical-cord blood match, using blood remaining in the umbilical cord and placenta after the baby is born. It is a rich source of stem cells--the building blocks of the blood and immune systems.
The Lis now waited for their second child to be born in the hope that the cord blood could be used to save Jay's life. PAMF obstetrician Dennis Siegler delivered their daughter, Elaine, and went through the intricate process to collect the cord blood.
"There is a 25 percent chance of a match. We were hoping that this was the right 25 percent," Dr. Siegler recalls. It wasn't. "It was devastating emotionally for the family, and for me."
The Lis turned to the Asian community--the best chance of a non-family donor match is with someone from the same racial or ethnic background. Both Jin Zhu and Gangqiang Li are natives of mainland China. They met in Germany at Justus-Liebig University, and were married after they moved to the United States in 1993.
The Asian-American Donor Program held donor-registration drives in the Bay Area and Southern California. Jay's story was put on the Internet. "It's not only for Jay," Gangqiang Li was quoted in one news article. "We know from spending so much time in hospitals that many, many kids are waiting for bone-marrow transplants." The drives successfully recruited thousands of donor registrations--but none was found to match Jay.
With hope nearly gone and time running out, the Lis at last got good news: In Singapore there was a five-out-of-six antigen match.
"It was a very good match, even if it was not a perfect match," Jin Zhu says. A National Registry staff member flew 10 hours to Singapore to monitor the three-hour marrow-harvesting procedure, then flew back.
At Stanford, tests were done on the marrow and Jay had radiation treatments and chemotherapy to kill diseased cells. Anxiety was intense, but all went well. "The donor was very kind. He sent Jay a Pooh bear," Jin Zhu recalls.
Jay still had to recover. When white cells returned, they fluctuated widely from day to day. Jay also beat 75-percent odds of an acute "graft-versus-host" disease, in which transplanted cells attack the patient's body. Jay was hospitalized for 7 1/2 weeks before coming home to the family's Palo Alto apartment. He survived the critical first 100 days after the transplant and is heading for the first year.
"Eighty percent of the kids are readmitted with problems. We've never gone back since he came home, except for routine checks and medications," Jin Zhu says. "Every other week he gets a blood test. Each time you are afraid something can turn out bad.... There is still a chance that the disease could come back.After five years, if he's still disease-free you can say he's cured.
"We hope he can be like a normal child--go to school and play outside," Jin Zhu says. Because Jay's body has not been able to fight off disease, he has been taking immunosuppressant drugs and staying indoors most of the time.
Jay is better now, and has gone on day trips to the San Francisco Zoo and Paramount's Great America. But even during the riskier first six months following the transplant, Jin Zhu and Gangqiang Li would take Jay and Elaine to play in a local park on weekends.
"His daddy loves him so much," Jin Zhu says, smiling. "He is the best father, really, even before Jay was sick. He spends time with him, playing. And Jay loves his daddy."