Be the Match

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By , Contributing Writer
August 2009

Life is about give and take. At any given moment, you never know on which side you might be.

Susan Walker-Spalding was at a salon getting a haircut when her cell phone rang. It was Be The Match, a national bone marrow organization with news that she was a perfect match for a toddler in Sweden in need of a transplant.

Susan Walker-Spalding, here with husband Norm, donated bone marrow to a toddler in Sweden.

Five years earlier, Susan and husband Norm had attended a donor drive for a friend who needed a bone-marrow transplant.

The initial test consisted of a free, painless swab inside the cheek.  They weren’t a match for their friend, but they stayed in the registry with Be The Match as potential donors for others in the future.

Bone-marrow matches are tough to find. In fact, for African-Americans, the chance of finding a life-saving donor is less than 20 percent and, for Caucasians, less than 50 percent. There simply are not enough people in the registry.

Many potential donors are scared off by inaccurate rumors that donating bone marrow is an especially painful process that involves donating pieces of bone. Some are misled to believe that all donations need to be extracted surgically, under anesthesia, when actually the technique used in most donations is much like the simple process of donating blood.

Bone-marrow donations save lives, much like organ transplants. But, unlike with organs, the donor doesn’t have to permanently lose a body part, or even die, before donating. Bone marrow replenishes itself within four to six weeks.

When Susan heard about the toddler in Sweden, she talked with her doctor and opted for the surgical procedure instead of the intravenous method (known as peripheral blood stem cell, or PBSC).

“I was told this was the best form for the recipient, and I thought, ‘How could I possibly not do it?’ If I gave the bone marrow the other way, and the recipient didn’t make it, I would always be second-guessing.”

Michelle Edelbrock is a bone-marrow donor. She and husband Roger are still in the donor bank.

For weeks before her donation, Susan was terrified something would happen to prevent her from surgery. “This little girl was receiving treatment to kill her immune system, so she could receive my donation, and if anything happened to me and I couldn’t donate, she’d be in extreme danger. I was paranoid. I drove like a little old lady everywhere,” she recalled.

All was well, and Susan was able to have the surgery. She insists the outpatient surgery was no big deal, describing her recovery as feeling slightly achy. “I usually run Tanglewood Boulevard every day, and I only had to miss two days after I had the surgery,” she said.

At the three- and six-month marks, Be The Match told Susan the toddler was still alive. Even though Susan doesn’t know the girl’s name, she said her thoughts are with the child every day. “We say prayers at dinner every night, and we include her in them.”

This experience has made Susan realize how we are all connected, even to those halfway across the world. “My father had always said part of his family was Scandinavian, and as I was a 10-out-of-10 match, it makes you wonder if I am related to this little girl.” Ironically, Norm is from Sweden and was bummed it was Susan, not he, who was the match.

Another couple, Michelle and Roger Edelbrock, decided that, since they regularly donated to the Blood Bank, it was only natural to register for a bone-marrow donor program as well.

About 18 months ago, Michelle received a call saying she was a possible match for a recipient. Further investigation showed that Michelle was a 10-out-of-10 match for a 42-year-old mother of two diagnosed with leukemia. Although Michelle couldn’t learn where the recipient lived, after some prying she was told her donation would be flying to somewhere where it would “need to wear a coat.”

Michael Wiesenthal is recovering after recently receiving bone marrow from a donor.

In May 2008, Michelle gave her donation intravenously. She had to receive injections to boost the growth of her bone marrow. She called it “mildly uncomfortable,” with her bones feeling “achy.” But for Michelle, a surgical nurse, the discomfort was worth the potential payoff.

“As a nurse, I help save people, but, ultimately, it is the doctors who really save the patient. I was really hoping that this was my chance to save someone,” she said.

Sadly, Michelle received news that the recipient passed away some time after receiving her bone marrow. When asked if she would donate again, she didn’t hesitate in answering yes, adding that three of her four grown children are now in the donor bank, too. “I truly believe in the pay-it-forward philosophy,” she said.

“Ironically, at the time I became a donor, my niece was diagnosed with leukemia. Ultimately, she may need a donation. You never know when you or your loved ones will be the one needing the donation. The more people in the donor bank, the more likely we can find a match for all in need.”

Michael Wiesenthal is one of those people in need, and he hopes to meet his marrow donor one day. Currently recovering from being given a recent donation, one of the hardest parts for Michael was not seeing his two children, Alexandra, 13, and Jared, 10, who were too young to visit him in the hospital.

Michael’s ordeal started about two years ago when he experienced problems with bleeding sores in his mouth, fatigue and shortness of breath. Diagnosed with acute myelogenous leukemia (AML), a fast-growing cancer of the blood and bone marrow, Michael underwent intensive chemotherapy. After a brief remission, his leukemia returned. His best chance for a cure was receiving a bone-marrow transplant. He was touched by how many came out to his donor drive.

Tracye Sellers, pictured here with husband Doug and daughters Abbey, 8; Anne Renee, 3; and Julianne, 5 is hoping to find a bone-marrow donor. (Photo: Christine Meeker Photography)

Tracye Sellers hopes a drive held for her recently at the YMCA will bring in her miracle. In 2007 and not yet 40, Tracye suspected her night sweats and excessively itchy skin were abnormal for a woman of her age. One morning she awoke to feel a large lump in her neck. Diagnosed with stage 2 Hodgkin’s lymphoma, Tracye endured a course of chemotherapy but relapsed about six months later. After another round of chemo and an autologous stem-cell transplant (using one’s own stem cells) that didn’t work, Tracye’s next hope is a transplant to replace her bone marrow.

To date, Be The Match has found three 9-out-of-10 matches for Tracye. Although a 9-out-of-10 match can be used, the odds of the recipient accepting the donation are lower for anything less than one that is 10-out-of-10.

“I am very hopeful. It’s important to keep doing what you have always done. I am still a mom, a wife, a church parishioner, a member of The Junior League.  It makes the time go by quicker because I am so busy living my life, not dwelling on my illness,” she said.

With husband Doug testing as a relatively high, DNA-wise, 6-out-of-10 match, Tracye says there is a strong chance her children could be a perfect match. Her oldest daughter, Abbey, 8, would like to be tested, but Tracye is reluctant to let her because donors ideally should be at least 18. So for now, she is pinning her hopes on a stranger turning up as a perfect match.

As for Susan, who donated bone marrow to the toddler and heard good reports at the three- and six-month marks, she hopes to hear more about her this fall when the child reaches the one-year mark. It’s up to the girl’s family whether they contact her or not. In the meantime, Susan continues to pray.

To learn more, visit www.BeTheMatch.org.

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