A call for help
Bone marrow transplant:
More African American donors needed
Jennifer Jones Austin (second from left), shown with her family, passed her first year of recovery following a stem cell transplant for leukemia. Austin received an umbilical cord blood donation. (Photo courtesy of National Marrow Donor Program)
Life was good for Jennifer Jones Austin, a 42-year-old lawyer and child advocate. She had a wonderful family — a husband and two small children. She exercised daily, didn’t smoke and enjoyed only an occasional glass of wine. There was no history of cancer in her immediate family.
But on one day in 2009, she began to experience cold-like symptoms. She thought she had the flu. But her fever persisted and new symptoms emerged. Her vision began to blur.
Her visit to her primary care physician ended unexpectedly when she was transferred by ambulance to a local hospital. After a battery of tests her diagnosis was confirmed. She had acute myeloid leukemia, a particularly aggressive cancer of the blood and bone marrow.
Within a five-day period, her life as she knew it came to a screeching halt. All was not immediately lost. The doctors bombarded her body with heavy doses of chemotherapy. It worked. The drugs drove her cancer into remission.
But her doctors also knew that the victory would be short lived. Without a bone marrow transplant, her doctors said that her leukemia was sure to return, and this time the results might be less favorable.
Austin took the news well. “I didn’t have too much time to be filled with worry,” she said. She admitted that she was concerned — but not for herself. “I was anxious for my children,” she explained. “I have to plan a life for them without me.”
Austin found herself outside her comfort zone of torts and depositions. Like most people, she didn’t give blood much thought — until she was diagnosed with a potentially fatal blood disorder. As if cramming for an exam, her knowledge of blood went quickly from the basics to advanced level. She learned that red blood cells carry oxygen and nutrients to every tissue in the body while white blood cells fend off infections and disease. And that platelets help the blood to clot.
But as she discovered, more mysterious was the source of blood cells. Oddly enough, blood is formed in bone — bone marrow to be exact. Bone marrow is the spongy tissue found in the interior of long bones, such as the thigh or pelvis.
But there’s another type of blood cell that became of particular concern to Austin, especially considering that they were the cause of her disease. Blood stem cells are immature cells that over time mature into one of the three blood cell types. Austin’s stem cells were defective and produced abnormal, or leukemia cells. Instead of preventing infections and abnormal bleeding, Austin’s did the opposite. If left unchecked, those cells could have spread outside the blood and wreaked havoc on other parts of the body.
When stem cells are destroyed by a disease or treatment for a disease, they must be replaced by a procedure called bone marrow — or stem cell — transplantation. Simply put, stem cells are removed from a healthy person (donor) and infused into a recipient (host). If all goes well, the donor stem cells find their way to the host’s marrow and start producing healthy blood cells.
A simple enough solution, but not without drawbacks. The biggest battle is finding a suitable donor. Because of shared parentage, there’s a 30 percent chance a sibling is an acceptable match.
Erma Hightower has seen stem cell transplantation from both sides. She became a donor while waiting for a donor for her husband who had multiple myeloma, cancer of a type of white blood cell. (Photo courtesy of National Marrow Donor Program)
Not just any donor will do. The NMDP notes that a patient’s likelihood of finding a donor in the Be The Match Registry depends largely on race. Blacks and Latinos have the lowest likelihood at 66 and 72 percent, respectively, compared to whites at 93 percent.
This disparity has prompted the Registry’s all-out effort to register African Americans. In 2010, only 7 percent of potential adult donors were black.
Erma Hightower is one such donor. Her husband was diagnosed with multiple myeloma, a malignant blood disorder. When she learned that she was not a match for her own husband’s transplant, she thought, “If I can’t help him, there’s someone else I could help.”
The 45-year-old legal secretary and mother of five did her part. When she was called to donate after a thorough blood evaluation and physical examination, she said she never considered backing out. As a donor she understood better than most what she was demanding from a total stranger. “It’s a big mouthful to swallow,” she said. “It’s the unknown.”
The doctors removed marrow from both sides of the back of her pelvis. She was stiff for a few days, but had no pain.
About six months later she got the call again for the same person. Although the recipient showed signs of improvement, he required another donation.
This time they took stem cells that circulate in the bloodstream called peripheral blood stem cells (PBSC). It was an outpatient, non-surgical procedure during which blood is drawn from one arm and separated. The stem cells are held, and the other blood cells are returned through the other arm in a procedure akin to a blood donation.
“That to me was harder,” Hightower said. While her first donation lasted less than an hour, the PBSC took more than four hours.
Hightower said that ignorance is the biggest obstacle to donating. People assume the process is very painful and that actual pieces of bone are removed. Neither is true. The marrow is extracted — not the bone — and the donor is under anesthesia. Most often, the donated cells are extracted directly from the bloodstream instead of the marrow.
“Don’t allow ignorance to hold you back,” she advised. “What if it were your brother? Wouldn’t you want someone to help?”
Hightower’s story does not have a happy ending. Her recipient, a 20-year-old male with leukemia, did not survive. Nor did her husband. A year after his transplant he succumbed to the disease.
She has no regrets. “A day with your loved one cannot be measured,” she said. “We had extra days we could share.”
No one needed to tell Austin about the preciousness of a single day. Once she learned of her need to find a matching donor, Austin wasted little time. Her family and friends rallied and organized one of the largest national donor drives.
In 13 weeks the drive added 13,000 donors to the Be The Match Registry. More importantly, according to Austin, 80 percent of the new donors were African American and other people of color.
In February 2010, Austin found her match in donated umbilical cord blood. She endured a week of chemotherapy and two days of full body radiation to kill any lingering cancer cells and dampen her immune system to reduce the risk of rejection.
She then spent six weeks in what she called “solitary confinement” to prevent a chance encounter with a virus or bacteria. Even her guests wore protective suits to prevent contagion of any kind.
Austin has recently celebrated a new birthday of sorts. She passed her first year of recovery. She says it’s too soon to say she is completely cured. That requires four more years of being diagnosed as cancer free.
She declares herself as “living without disease.” And for now, that’s good enough.