A Mysterious Illness
Aplastic anemia is a disease that causes the bone marrow to malfunction, making it unable to do its primary job of producing new blood cells. "Imagine a garden in which the seeds have been attacked by something and won't grow," says David Margolis, M.D., an associate professor of pediatrics at the Medical College of Wisconsin, in Milwaukee, and the pediatric oncologist who is treating Kailee. If new blood cells aren't constantly produced, the body's supply eventually dries up.
Though doctors don't know for certain what causes the disease, theories abound. Aplastic anemia has been linked to environmental toxins, and Linda wonders whether Kailee was somehow, somewhere, exposed to poisonous chemicals. A virus is another possible culprit. "We took her to Australia last year--maybe she caught an infection while walking on the beach," Linda speculates.
Aplastic anemia may also be linked to heredity (it appears to be more prevalent in Asian populations), but Kailee's family medical history is a complete unknown. "The only thing we know is that she was abandoned on the steps of the Teacher's Training Institute in Chengdu, China, at 10 days old," Linda says.
Since Kailee's diagnosis, her family has been desperately trying to learn more. They've been in contact with Chinese officials, and the newspapers in Hunan province have run pictures and stories about Kailee's plight. "We're praying that her biological mother or some other family member will come forward," Linda says. But the Wellses know that's unlike-ly: In China, it's illegal to abandon a child, and anyone admitting to it would face huge fines and possibly imprisonment, as well as shame.
A search for the top experts in aplastic anemia led the Wellses to the Children's Hospital of Wisconsin, in Milwaukee. So Linda quit her job, withdrew Kailee from school, and moved to that city with her daughter last May. The two have since been living at Kathy's House, a comfortable residence for families undergoing treatment at local hospitals. They share a hotel-style suite furnished with two double beds, a TV, and a telephone that Kailee uses each night to talk to her dad at home. Their days are spent shuttling to and from the hospital for a seemingly endless regimen of tests and treatment.
"This girl has been a real trooper," says her mom during a recent check-up. Kailee is sitting placidly while a nurse draws blood through a catheter in her chest, implanted to eliminate the need for more needle pricks. Afterward, Kailee grabs a rubber glove and a bandage and scoots off to play doctor with a friend on the ward.
Initially, Kailee's disease was treated with Atgam, a type of antithymocyte globulin (ATG) that's derived from horses. The drug suppresses the immune system, which is believed to be the source of the cells that attack the bone marrow. Treatment was brutal: It kept Kailee in the hospital for 14 days and left her weak, tired, and prone to infection. Steroids caused her small body to puff up and rendered the normally sweet girl cranky and irritable.
It was all for naught: Kailee did not respond to the treatment, and the disease continues to destroy her blood supply. The next line of offense is Thymoglobulin, a more powerful form of ATG derived from rabbits. But Dr. Margolis says it's likely that Kailee will ultimately need a bone-marrow transplant, the final weapon in the battle against aplastic anemia. "But we'll only be able to do that if we can find an appropriate donor," he says. "And that's a very big if."