Educator Fights Leukemia With Support of “Families” After four hectic years as an elementary school principal in Roxana, Ill., Debra Ochs had learned to take surprises in stride. A substitute teacher fails to show up. A food fight erupts in the cafeteria. Two small brothers scuffle at the bus stop. “Each night, I made a list of things I wanted to accomplish the next day, and I was lucky if I crossed one thing off because the day never went as I planned,” says Ochs, 34, a Bethalto, Ill., resident. “After that, he called a second time and said he would like to see me first thing the next morning,” Ochs says. “He wanted to be the one to tell me I had acute myelogenous leukemia (AML).” That same day, she said a difficult farewell to her daughter, and Jeff drove her to the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine to begin an intensive, 30-day regimen of chemotherapy and blood transfusions under the direction of her new medical oncologist, John DiPersio, MD, PhD (the “Big D,” as Ochs jokingly calls him). That month was rough for his patient, recalls DiPersio, Siteman deputy director and the Lewis T. and Rosalind B. Apple Professor of Oncology. “Her treatment was complicated by life-threatening infections, fevers and low blood counts, but she eventually went into remission,” he says. During her hospital stay, Ochs participated in a pioneering research project — a collaborative effort between Siteman and Washington University’s Genome Sequencing Center that is supported by an $11 million grant from the National Cancer Institute (NCI). In an effort to trace genetic alterations associated with AML, Siteman scientists are collecting cell samples from leukemia patients at the time of diagnosis and at key intervals during the disease process. “Her cells have been banked, a number of genes have been sequenced and new techniques are being developed to scan her entire AML genome for small mutations, deletions and genetic amplifications that might contribute to her disease,” DiPersio says. “We’re hoping to correlate those changes with prognosis and treatment.” Beyond the physical effects of chemotherapy — fatigue, nausea, total hair loss — Ochs minded the psychological stress still more. “From the time you wake up in the morning to the time you go to bed at night, it is always there,” she says. “Even when you are sleeping, you dream about what’s going on. You constantly wonder: Is that the same feeling I had in my back before? Is that the same twinge? You worry about what will happen if you don’t make it, especially what will happen to your family.” In Ochs’ case, she had an extra cause for anxiety: her unborn child. With the powerful chemotherapy agents she was taking, should she consider abortion? In the end, she and her husband, members of the Bethalto Church of God, decided to continue with the pregnancy. That July, a tiny daughter was born to them much too early, and she did not survive. They named her Zoe, which means “life” — an appropriate name, says Ochs, because if it hadn’t been for the blood work her physician had ordered during that first prenatal exam, she might not have survived. Meanwhile, Ochs soon returned to her active life, including her part-time studies for a doctorate in education at Illinois State University. DiPersio — “a straight shooter,” she says gratefully — had given her the statistical chances for survival. If the disease did not recur during the first year, he said, she had a 30 percent chance of making it. After the second year, her odds rose to 70 percent, and after the third, to 90 percent. A year to the day after her first hospitalization, Ochs discovered not only that she had relapsed but also that she had contracted bacterial pneumonia because of her low-functioning immune system. Soon she was back at Siteman, fighting for her life. This time, she took a more potent chemotherapy drug that caused severe side effects, but her doctors were in an even more desperate battle than she knew. “The chance of getting patients into remission once they have relapsed within a year of diagnosis is actually quite low, only about 15 percent or 20 percent,” DiPersio says. “But we were fortunate to do that and prepare her for a stem-cell transplant.” Unfortunately, Ochs’ two younger sisters were not a match, so Siteman — the fifth-largest unrelated donor transplant center in the world — had to search internationally for an unrelated donor. They found one in time, an unnamed European whom Ochs regards as her hero. “I think he is a wonderful person even though I don’t know him,” she says. By August 2004, Ochs was well enough to go home, where her “families” were ready to support her: Annika and Jeff , her parents and sisters; the church and school families who had sent hundreds of cards and weeks’ worth of meals; and her husband’s colleagues, who had been teaching his classes during their free periods so he could be at her side. Today, she continues to be healthy and in remission. At the January 2005 announcement of Siteman’s designation as an NCI Comprehensive Cancer Center, she was asked to speak, and she thanked those who had helped her, including DiPersio (“He is truly amazing,” she says); nurse coordinator Maggie Shamroe (“She has even taken the time to call me in the evening”); and cheerful housekeeper Margaret Norwood (“Every morning she opened the blinds to let the sunlight in and said, ‘Isn’t it a beautiful morning?’”). Although she remains optimistic, Ochs knows that she cannot yet declare victory over her disease. While she waits and hopes for a cure, doctors like DiPersio are developing new treatments. With the help of cellular products provided by Siteman’s Good Manufacturing Practice laboratory, one of the largest university-run facilities of its type in the nation, he is working on a groundbreaking gene therapy trial. This study, aimed at patients who have relapsed after a failed unrelated stem-cell transplant, focuses on the genetic manipulation of T cells that cause graft-versus-host disease (GVHD), an often-fatal transplant complication. Last fall, Ochs began a new job as director of curriculum and instruction for her district, a role that gives her more time with her family. Her priorities have shifted since her illness. “All those things we take for granted? Now I don’t,” she says. “I’m so thankful to be here, and I make the most out of every day.”
The biggest surprise of all came early in 2003. A health crisis disrupted her work and family life — and nearly proved fatal. Up until that point, things had seemed peaceful and predictable. She and her husband, Jeff, a junior high school teacher, had a daughter, 4-year-old Annika, and had recently learned they were expecting a second child in the fall. For Ochs — an eager exercise buff who was “healthy as a horse” — that was welcome news but no reason to slow down. Yet she soon felt exhausted and nauseated, with aching bones and joints. Next came a serious sore throat that persisted despite two rounds of antibiotics. Ochs spent her entire spring vacation in bed. At her initial obstetrical checkup in April, she had a standard blood workup and was surprised when her doctor called that evening, asking her to return the next day for a repeat test. 
Debra Ochs treasures time spent with her husband, Jeff; daughter, Annika; and one of the family's dogs.
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