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A Body Frozen in Place
In April 2004, Emily said a tearful goodbye to Emma before flying to Chicago. Babies weren't allowed in the transplant unit, so the little girl would stay in Texas with Kevin for several weeks. Since Emily was in no shape to travel alone, her mom accompanied her. Emily was so stiff, her arms and legs didn't bend much, and it was very hard for her to sit down in the wheelchair or on the plane. She couldn't get up from a seat on her own; her mom had to lift her. Even getting into a cab was an ordeal. Emily's brother, who met them at the Chicago airport, says, "She was stiff as a board. We had to lay her sideways across the backseat. Mom and I sat up front with the driver."At the hospital, the two women met with Yu Oyama, MD, then director of the immunotherapy program. "Emily was suffering horribly. Not only was her skin hard, like a stone, but her body was almost totally frozen in place," says Dr. Oyama.
After two weeks of medical tests followed by removal of the stem cells, Emily received four doses of chemotherapy in as many days. That sparked hot flashes and severe vomiting. Her weight dropped from 110 to 87 pounds on her five-foot-five-inch frame. She also slipped while getting out of bed and suffered a broken jaw, further impairing her ability to eat. To lift Emily's spirits, Kevin sent videos of Emma. "There was one of her splashing in the pool and another of her sleeping in her crib. I watched them over and over, wishing I could be with her."
On May 18, 2004, she received her intravenous stem cell transplant, an occasion the nurses dubbed her birthday, because it was the birth of her new immune system. At first, she'd be highly vulnerable to infections but would then gradually gain resistance. If the transplant was successful, her immune system would normalize and no longer stimulate the production of excess collagen. After that, it was hoped, progression of the disease would be stopped, her skin would soften and her energy would improve.
By the third week of June, doctors thought it was working: Emily's blood counts were better, and she had enough white blood cells to fight infection. So they said she could leave the hospital. She was jubilant but soon learned she had to return, as her kidneys were functioning at only a fraction of their normal level. "It was a huge emotional and physical setback," Emily says. "I was hoping I'd be seeing signs of improvement, but I was even worse off."
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