“What if you only had a 20 percent chance of living?” That’s the question Rachel Swink, then a seventh grader, posed to her fellow classmates in an article written for her school’s newspaper. The article’s focus was on Enbrel, the drug at the heart of a University of Michigan Health System clinical trial that saved Rachel’s life and, as she wrote, “could save the lives of millions.”

Today, Rachel is a typical eighth grader. She recently began guitar lessons, likes helping her mom in the kitchen and often teases her older brother. But what she’s gone through in just 14 years is not so typical.

Five years after fighting a stage IV neuroblastoma at age 3, doctors found precursor cells to leukemia in her bone marrow. Rachel had a second bone marrow transplant, but this time from a matched, unrelated donor, an option that puts patients at high risk for both short- and long-term complications.

Soon after the transplant, Rachel came down with idiopathic pneumonia syndrome (IPS), a condition where the lungs become so severely inflamed that the patient has serious difficulties breathing. Rachel’s doctors believed that her lungs were under attack by the donor bone marrow.

When Kenneth Cooke, M.D., associate professor for the U-M Department of Pediatrics and Communicable Diseases, first heard about Rachel, she had already been transferred into the Pediatric Intensive Care Unit, and her parents were told she had a 20 percent chance of living.

Rachel’s parents made the decision to enroll her in Cooke’s clinical trial using Enbrel, a medication that is FDA approved to treat certain forms of arthritis, but was also found in Cooke’s laboratory to neutralize the protein causing the IPS. That decision saved her life.

Finding a Miracle

“Rachel exemplifies what the U-M bone marrow transplant program is all about,” says Cooke. “Our vision is to raise the standard of care, and we do that through our research.”

Dr. Cooke’s investigation into the treatment and prevention of bone marrow complications such as IPS began during his years as a fellow when he saw the pneumonia claiming the lives of some of his first bone marrow transplant patients.

“Patients receive the best standard of care that we can offer and it’s still not even close to being enough,” says Cooke.

That is the essence of Cooke’s motivation to raise the bar, and find better, safer treatments for his future patients.

Cooke collaborated with Greg Yanik, M.D., another physician on the bone marrow transplant team at the U-M, to bring the Enbrel therapy forward to a phase 3 clinical trial. Soon hundreds of patients nationwide will be enrolled in order to determine whether the drug will remain as effective as initially found in treating and preventing transplant-related complications.

Rachel was just the sixth patient enrolled in the Enbrel clinical trial.

“Dr. Ferrara, who was on rotation with us, had told us about this miraculous turnaround that patients were having with Enbrel,” says Jenni Swink, Rachel’s mother. “We are grateful we were at a teaching hospital like U-M that develops new strategies. At that hour, the new research was our only hope.”

Jenni still remembers the morning after Rachel was given the medication. She says, “Rachel had made an overnight turnaround. I remember returning to Mott’s seventh floor from Pediatric ICU and it felt like we were in the Olympics doing our victory lap.”