Saving Kailee, and Beyond
05/15/2006 at 01:00 AM EDT
First day back from spring break at her elementary school in Shorewood, Wis., 9-year-old Kailee Wells played on the tire swing, lined up in the hall with her class and wished she could eat the school lunch instead of the one she had brought from home. Ordinary stuff, by most kids' standards, but for Kailee—who has spent much of the past four years in the hospital—April 24 was the beginning of a new life. "It was an awfully big day," says her father, Owen Wells.
And something of a miracle—given that six months ago Kailee was losing her battle against a rare blood disorder. She owes her recovery to her fighting spirit—and the tenacious efforts of her parents, Linda and Owen Wells, who adopted her from China in 1998. In need of a bone marrow transplant, Kailee came up against a harsh reality facing Asian-Americans and other minorities in this country: a shortage of genetically similar donors (see box). Determined to find a match for Kailee, the Wellses launched a global search that saved Kailee's life—and helped to add some 300,000 names to the donor rolls in China and 4,000 to the U.S. registry. Owen says that has resulted, so far, in more than 280 lifesaving matches, most of them in China. "The Wellses have made one of the largest contributions to the registry," says Dr. Jeffrey Chell, head of this country's National Marrow Donor Program.
But what drove the Wellses was their need to save the girl they'd traveled halfway around the world to adopt. Linda, 54, an attorney, and Owen, 55, who owns a graphic design and printing firm, first decided to adopt in 1996, on their 15th anniversary. Two years later, with three biological kids grown, they traveled to Changsha to meet Kailee, who was so healthy "she never had a cold," says Linda. Then, on her fifth birthday, Kailee started to bleed from her nose, eyes and ears. When doctors delivered a diagnosis of severe aplastic anemia—a disease that stops bone marrow from producing red or white cells and the platelets that enable blood to clot—they gave Kailee a 20 percent chance of survival.
A month later, while still hoping for a match from the marrow registry, Owen told Linda he was going to launch a donor drive in Albuquerque, N.Mex., then their hometown. Marrow registry representatives warned Owen that the odds of finding a match were very slim and he needed to save his time and energy for his daughter. Linda tried to talk him out of it, but Owen was resolute. "I couldn't just sit there and not do anything," he says. When he raised $13,000 (largely from his clients) and attracted 543 people, Linda got on board. It would be the first of about 50 such drives that Owen and Linda would lead in the U.S. and abroad.
Soon, though, caring for Kailee became a full-time job. In and out of the hospital for transfusions, she couldn't attend school because the risk of infection was too high. In May 2002, after Linda folded her law practice, she temporarily relocated with Kailee to Milwaukee to be close to Dr. David Margolis, a specialist at Children's Hospital of Wisconsin; Owen remained behind, building up a Web site to find donors. Soon gifts and e-mails poured in from more than 100 countries. Kailee disliked opening the gifts. They reminded her, says her mom, "that she was at risk of dying." Linda, meanwhile, found herself angry at having to answer the e-mails. "I'd get 300 e-mails, not because I was famous but because my child was at risk of dying." But Owen was insistent. "I said, 'Honey, we're going to save our little girl. You have to do this,'" he recalls.
By now Kailee was grappling with her own mortality. She would ask to visit cemeteries and talk about skeletons and cremation. "There was another time that hits me hard," says Owen, his voice cracking. "Kailee and Linda were making Kailee's birthday cake. Out of the blue Kailee said, 'Mommy, I'm going to miss you when I die.'"
In November 2003 Linda traveled to China to seek out new donors. "One of the hardest things I've had to do was leave Kailee while she's sick," she says. Poised before a 30-ft.-tall picture of Kailee, Linda held a press conference in Beijing. That week China's donor registry, instead of adding 14 new names as usual, enrolled 10,000.
The trip was cut short when Linda got a call—Kailee had been admitted to the hospital for uncontrolled bleeding. At that point the Wellses decided to make a permanent move to Wisconsin. Far harder was the decision to let a transplant go forward with a less-than-perfect match—a risky procedure with a limited chance of success. Following chemotherapy, the transplant took place in January 2005; two months later Kailee's body rejected the marrow. In an online journal, a distraught Linda wrote, "It feels like a death sentence.... [Kailee] rolled around the hospital bed, sobbing, screaming until IV morphine brought temporary relief. It was agony."
The Wellses prepared to leave for China again—this time to make a needle-in-a-haystack search for Kailee's birth parents. The day before they were to leave, astounding news: An ideal match for Kailee had been found in China, a young man in his 20s. "Your love for your child has touched our country's people," he would later write the Wellses. On Nov. 7, as the donor's stem cells flowed into Kailee's body, she told her parents, "It tastes like peaches." Today, though her health is still fragile, Kailee has "an excellent prognosis," Dr. Margolis says, with the odds of a normal life finally in her favor.
So the energetic little girl isn't wasting a moment, having limited playdates and playing on the monkey bars, though her blood tests are being watched closely to make sure a fall doesn't pose a fatal danger. "We're starting to let her be a child again," says Owen, who is busy helping with the national registry's donor drive in 109 cities from May 12 to May 14. "Even when Kailee is completely healthy, I'm not going to stop," he says. "I'm too motivated."
For more about the program, go to www.marrow.org. For more on Kailee, go to www.kaileegetwells.com.
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