May 13, 2011
The phone call caught me off guard but was unforgettable. The blood test confirmed that Jack is a perfect match, Dr. Steve reported in a voice that implied “this is big.” And so it came to pass that seven springtimes ago, 13-year-old Jack saved 11-year-old Julia from a rare and deadly blood disorder by donating the bone marrow he referred to as his “mojo.”
Marrow is the soft, sponge-like material inside our bones that contains blood-forming cells. Often thought of as an operation, a bone marrow transplant is actually more like a blood transfusion. Only the donor undergoes anesthesia so marrow can be harvested from his or her pelvic bone and later transferred to the recipient intravenously. The healthy bone marrow enables the recipient’s body to produce new cells after the unhealthy ones have been destroyed by chemotherapy and radiation. Most donors return to normal activities in short order, having experienced minimal discomfort. The extracted marrow is replaced completely within weeks.
The National Marrow Donor Program (NMDP), a federally funded nonprofit based in Minneapolis, operates the Be the Match registry (bethematch.org) for bone marrow and umbilical cord blood which, along with peripheral blood cells, are the three cell sources for transplants. NMDP reports that more than 10,000 patients are diagnosed annually with life-threatening diseases for which a bone marrow or cord blood transplant is their only hope of a cure. Seven of 10 patients who need transplants do not have a family member whose genetic make-up is identical to theirs. Those patients must cast a net, hoping to find an unrelated donor whose HLA antigens match their own. Markers that determine a match are inherited and are evaluated through a blood test. Typically, the closer the genetic make-up the better the outcome.
Since its inception in 1987, NMDP has helped more than 43,000 patients to find non-family donors. About 75 percent of transplants involve adult donors; the balance use cord blood, said Mary Halet, director of recruitment and community development for NMDP. Just last year, the organization facilitated an average of 440 transplants per month. Patients have better outcomes if their donors share their race or ethnic background. A patient’s likelihood of having a willing and able donor on the registry ranges from 66 percent to 93 percent, with African Americans at the low end and Caucasians at the high end. With 9 million donors already registered, Be the Match is actively recruiting people of color to join the registry. The goal is to have a match for every patient.
Physical risks to the donor are minimal. Yet, the decision to donate or accept marrow can raise weighty and unexpected concerns that may be difficult to express when a life hangs in the balance. While Jack is proud to have been his sister’s donor, he admits he was worried the transplant might not take and he would fail his little sister. Julia, while grateful, wondered whether Jack would transfer his autism along with his healthy marrow.
When the plastic bag full of marrow was attached to Julia’s IV, such a simple step felt almost anti-climatic. Yet nothing about a transplant is easy. The therapy is fraught with risks and complications. It is the culmination of a grueling preparatory treatment designed to eliminate the patient’s immune system, making him or her defenseless against germs or illness but receptive to new cell growth.
The road to recovery can be long and painstakingly slow. Patients, particularly those with less than perfectly matched donors, are at risk for graft-versus-host disease, in which the recipient’s body rejects the foreign cells. Until their immune systems are restored through healthy new cells, immune-suppressed patients must take protective measures such as remaining in isolation and wearing paper masks. Patients can be cured of the disease but experience long- term complications. Risk-laden, it is an end-of-the road therapy that eradicates deadly diseases more often than not.
The University of Minnesota Bone Marrow Transplant Program has performed more than 4,000 transplants over the past 40 years on pediatric and adult patients from around the world. The therapy is being applied to ever more conditions, ranging from diseases such as leukemia, lymphoma and sickle cell disease to relatively rare conditions such as Fanconi anemia and various inherited metabolic and immune disorders. Parents of newborns, typically not focused on life-threatening illnesses, can bank cord blood in case life throws them a curve ball and they suddenly become experts in life-saving treatments.
Such therapies offer huge life-saving potential; however, it can only be realized if patients have donors who are willing and available to donate to any patient in need. To enlist healthy people to join the marrow registry, Be the Match runs public service announcements. One features Shaquille O’Neil and coach Trent Jones issuing a challenge to African Americans. Many African Americans fighting leukemia, lymphoma and sickle cell disease cannot find a donor. We need more African Americans to step up. You can be the one to save a life. Step up. Get on the marrow registry, they implore.
Another, more heart-pinging PSA, conveys a color-blind message. A little girl, dressed in stocking feet and a hospital gown, wanders alone outside a hospital, her eyes scanning the crowd. The narrator asks softly, What if there was a way to heal someone? To have the power to stop someone from dying? There is a way – and it’s you. The child stops when she spots a young woman, who pauses simultaneously. They make eye contact and a slight smile spreads on the girl’s lips. Something momentous has just occurred.
Few things in life are as powerful and rewarding — and relatively effortless — as being a donor. We felt we’d hit the jackpot when we learned Julia had the same genetic makeup as Jack, especially after we saw how her experience was more seamless than that of others we met on our journey who had to search for their donors. Not all of them lived to tell their stories.
As life marches on some memories of that time have faded; others are deeply embedded. I recall a conversation with Jack’s aunt on the eve of the transplant in which she offered a terrified mother comfort and perspective. Many go through life searching for their purpose, she’d said. Jack is so lucky to have found his at such a young age. Such luck is not exclusive to Jack; it’s there for the taking. Every healthy person has the potential to shape the future of friends, family or strangers whose lives depend on it. All one need do is accept the Shaq challenge.