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One Last Hope
But Emily's luck didn't last. In 2003, the disease scarred her lungs, leaving her too short of breath to push a stroller very far. Joints all over her body became painfully stiff, severely restricting her range of motion. Emily and Kevin had to hire a full-time nanny to look after Emma.By January 2004, Emily was so disabled, she couldn't drive a car, dress or feed herself, or walk more than 15 feet. To add to her misery, her marriage fell apart, for reasons unrelated to her illness. She and Emma moved to a ground-floor apartment, since Emily was unable to climb even a single step. Friends, relatives and members of her church came in shifts to help, while the nanny looked after Emma, then 16 months. "I could feel my body starting to shut down, and I realized I was dying," Emily says.
That's when a friend sent her an article about a risky treatment that might help: a stem cell transplant, using the person's own stem cells. A machine extracts the cells, which are frozen until needed, from the blood. The patient is then given high-dose chemotherapy to kill the faulty immune system that causes the disease. The hope is that by then transplanting the stored stem cells, which have the unique ability to become other types of blood cells, the patient will generate a new immune system -- one that won't attack the body. While the infection fighters are being produced, a process that usually takes eight to ten days, the patient is dangerously defenseless against germs. Complications can include infections, lung congestion, liver disease, kidney failure and heart problems. Because of the hazards, transplants are given only to patients who are at high risk of dying in the next five years but aren't too ill to tolerate the rigors of treatment.
At the time, about 30 Americans with scleroderma had undergone stem cell transplants, and three of them died of complications. To reduce dangerous side effects, doctors at Northwestern Memorial Hospital in Chicago were testing a stem cell transplant they hoped would be less toxic because it doesn't use radiation. However, their method was then so new, they'd treated only five patients in a clinical trial. While there had been no treatment-related deaths, researchers were still evaluating the results.
Still, Emily felt hope bubble up. "It sounded like the answer to my prayers. None of the safer options were helping, so I knew I had to do something drastic or Emma would grow up without a mother." Although the doctors were willing to accept Emily, her health plan refused to cover the $75,000 cost because the treatment was considered experimental. After two appeals failed, her parents, Don and Joanne Nitz, who breed show horses in Holland, Michigan, took a second mortgage on their home to help pay for the transplant.
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