Jennifer’s Story about Acute Myelogenous Leukemia (AML)
When a suitable bone marrow donor to treat Jennifer’s acute myelogenous leukemia couldn’t be found, she came to Memorial Sloan Kettering for a transplant using stem cells from umbilical cord blood. Today, the mother of two is a healthy long-term transplant survivor and back at work as CEO of a nonprofit antipoverty policy and advocacy organization.
This spring, when she watches her daughter’s high school graduation, Jennifer Jones Austin knows she’ll feel awash in gratitude for simply being there. Five years ago, she nearly died from acute myelogenous leukemia (AML), before a cutting-edge stem cell transplant using umbilical cord blood at Memorial Sloan Kettering saved her life.
As the mother of two school-aged children juggling a job as senior vice president at United Way of New York City, Jennifer figured she was just run-down when she came down with a fever.
She recalls wondering, when she got the AML diagnosis, how it could have happened to her. “I ate the right diet and exercised. I believed in taking the best care of my body possible. I was in the gym two days before my fever started.”
The cancer advanced rapidly. Within days, her organs began to fail, and she was put on a ventilator to breathe. “My family was told I was not likely to wake up. My husband and children came to say good-bye,” she recounts.
Searching for a Bone Marrow Donor
Despite Jennifer’s fragile state, her doctors started chemotherapy. “At this point, they figured it couldn’t do any harm, because I was going to die anyway,” she said. “But I responded to the chemotherapy. I survived.”
Chemotherapy leads to remission in many people with AML, but genetic tests showed that Jennifer’s cancer cells had a chromosomal abnormality that’s a marker for aggressive disease. She needed a bone marrow transplant — quickly.
The first choice for a donor is a sibling donor. Each sibling has a 25 percent chance of being a match. With three siblings, Jennifer was optimistic. But while they matched each other, none were matched her.
Her next option was to find an unrelated adult donor using the national Be the Match registry. But that search proved fruitless too. While many American whites of European descent find a match, only about 19 percent of African Americans do, according to a recent New England Journal of Medicine study. Not only are they and others of mixed ethnic and racial background under-represented in the registry, they also have greater diversity in their tissue types.
Jennifer’s husband and their network of friends and colleagues in African American churches, colleges, and social organizations began a drive to find a donor. She knew the odds were against her. With 11 million names already in the national registry, adding more through a donor drive was unlikely to turn up a match.
The drive added 13,000 potential donors — a huge success — though none were a match for her. “Even if it didn’t work for me, those names could be a match for another person,” she says.
A New Option Emerges: Umbilical Cord Blood
Because continuing to wait for a donor was so risky, her physicians suggested Jennifer contact MSK to pursue another route: umbilical cord blood. Bone marrow transplant specialist Juliet Barker, director of MSK’s Cord Blood Transplantation Program, and hematologist-oncologist Sergio Giralt, chief of the Adult Bone Marrow Transplant Service, are leading the way in new approaches to transplantation using blood from a human umbilical cord, which is rich in blood-forming stem cells.
Among other advances, Dr. Barker was one of the first to develop a technique to make cord blood transplants available to adults by combining partially matched blood from two umbilical cords from two different neonatal donors to generate a sufficient dose. The MSK team was also instrumental in creating a formula to help choose the best cord blood donor cells from worldwide banks, a process that is typically extremely complex, explains Dr. Giralt. “We decide among multiple, worldwide sources which one will be the best for an individual patient.”
Because it’s less important to find a perfect tissue match with cord blood transplants as opposed to transplants using cells from adult donors, African Americans have much better odds of finding a cord blood match.
In Jennifer’s case, she finally had some luck. Five months after her diagnosis, she was prepped for transplant at MSK, which involved wiping out the cancer cells using chemotherapy and radiation and then infusing the donated cord blood cells.
Ultimately, transplanted cord blood provides an alternative that broadens people’s access to potentially curative treatment, explains Dr. Barker. At MSK, cord blood transplants are as good as those from an unrelated adult donor, she says.
Getting Back to Business
After the transplant, Jennifer spent 40 days in isolation at Memorial Hospital while the stem cells engrafted (made their way to the bone marrow and began creating new blood cells). Though a small circle of family could visit, they wore masks and gloves to protect her from germs as her immune system rebuilt itself.
Once home, she also had to stay put for two more months, avoiding public places where she could be exposed to germs and possible infection. Though she had several scares, including bouts with graft-versus-host-disease, a common transplant side effect in which the donated blood attacks the host’s body, she gradually regained her strength and energy.
“I noticed I could walk one block. Then I could walk two. Then I was going up the stairs, no problem,” she says. “It was magical.”
Today, Jennifer’s back to her busy schedule, enjoying travels with her family and working as CEO of the Federation of Protestant Welfare Agencies, a nonprofit antipoverty policy and advocacy organization.
“I still can’t believe how far I’ve come,” she says. “I saw Dr. Barker and the team at Memorial Sloan Kettering and I never looked back.”