Khara Davis, the bright-eyed little girl who captured the public eye when she was a patient at Primary Children's Medical Center in the early 1980s, survived for nearly six years on a donated liver.
But she died earlier this year and, ironically, it was not failure of the donated organ that claimed her life, but cancer. The medicine that helped her body accept the life-saving liver ultimately took her life.Immunosuppressive drugs do increase the risk of cancer five or six times (12 in 1,000 as opposed to 2 in 1,000). But, said Dr. Lawrence E. Stevens, the benefits far outweigh the risks.
"We think it's ethical to offer transplantation as an alternative, even though there is this difficult problem to face," he said. "In the case of Khara, the transplant was necessary for her to continue living; she would have died from her liver disease within a short period of time if an organ hadn't been available."
Stevens, chief of surgery and director of LDS Hospital's transplant program, said of the 350 patients who have undergone kidney transplantation at LDS Hospital over the last 41/2 years, two have developed lymphomathous diseases (cancer of the lymph cells).
"Fortunately," he said, "the problem isn't common. But when it does happen, it is very devastating and difficult to deal with."
No one knows that better than Donna Davis, Khara's mother, who said the cancer was much worse to deal with than the incurable liver disease that threatened her daughter's life from birth.
"It (the cancer) was horrendous because there was nothing anyone could do," she said. "It was a Catch-22 situation. Without the cyclosporin, she would reject the liver, but with it she got cancer."
Khara, who was born with familial intrahepatic cholestasis, a hereditary disorder that causes the liver to deteriorate, received a liver transplant at Pittsburgh Children's Hospital when she was 41/2.
"For the next five years she was relatively healthy," Davis said. "She was a normal fourth-grader who had boyfriends."
That all changed in March 1987 when Khara developed a persistent sore throat. A tumor of the trachea, blocking her airway, was removed by physicians in Pittsburgh and the dosage of cyclosporin was reduced.
After eight surgeries to remove reoccurring tumors, physicians took her off the immunosuppressive medication entirely in June 1987. Nevertheless, her condition worsened.
Tumors progressed into her lungs and into the tissues around her eyes, and Khara underwent seemingly endless radiation and chemotherapy treatments in Salt Lake City and Pittsburgh.
When the cancer finally went into remission, Khara underwent a bone marrow transplant in Pittsburgh last January. Shortly after, however, she developed a fungus infection. Even donated white blood cells weren't enough to save her life. Khara died in February, a month after her 11th birthday.
"I am still angry and lonely without her," Davis said. "It's hard to be objective and say this drug helped; it also killed her."
Suffering as much as his parents is Khara's 6-year-old brother, Corey. He was born with the same incurable liver disease, and within the next few years could also be a transplant candidate. He is also being treated at Primary Children's.
"The doctors try their best to save these kids' lives," Davis said. "It's something that just happened. But I hope they find a cure for it before we have to make a decision about Corey."
It's also the hope of transplant specialists.
"The treatment of cancer is sort of the flip side of the coin in treating rejection of a transplant," Stevens said. "If we trying to treat a cancer, we would like to strengthen all the immune defenses. But if we are trying to keep a graft from being rejected, we have to weaken the defenses."
Stevens said new agents are being developed that are less likely than cyclosporin and earlier immunosuppressive drugs to cause cancer. "The new agents are more specific so we hope it will be possible to specifically knock out part of the immune defense to protect the graft, but not weaken the defense against cancer."
But the specialist said the immunosuppressive drugs aren't the biggest problem transplantation surgeons face.
Their biggest challenge is getting enough donor organs to meet an increasing number of possible recipients. Obtaining adequate financing for organ transplantation is also a problem. Many families cannot bear the exorbitant costs of heart and liver transplantations, which are often not covered by third-party payers.