Connecting Healthy Adults to People With Blood Cancers

His hand felt like a block of ice. A tingling sensation crawled up his arm and inched toward his shoulder. He tried to shake it off, hinging his knuckles with the little strength he had left, but the thick leather strap kept him firmly in place.

Trapped.

His fingers were numb, his hand was numb. The creeping cold traveled higher still until his arm was a paralyzed block of frostbitten flesh — only he wasn’t frostbitten at all. He was sitting in a room in the middle of July, the air conditioner blazing and a white fleece blanket draped comfortably across his 6-foot-2-inch frame.

“You’re about done, Mr. Willingham.” The woman in white checked his once tan, muscular arm, now as bleached as his blanket, and walked back across the room to tend to the whirring machine in the corner. “But if you’d like to keep going, we could always use more.”

Photo by Geoff L. Johnson

Britt Willingham joined the Be The Match registry and donated stem cells in the hopes that he could save the life of someone with a blood disease. [Photo by Geoff L. Johnson]

The last thing he wanted to do was keep going. But he knew he would. “Sure,” he said, leaning his curly brown hair back down onto the cool, green hospital plastic, closing his eyes, trying his best to get comfortable. “Let’s keep going.” On a normal Monday, Britt Willingham would be making office small talk, secretly checking the score of the Braves game and counting down the minutes until 5 o’clock — closing time. On a normal Monday, he would be meeting his friends for happy hour, cooking dinner in his two-bedroom Atlanta apartment and spending the evening watching National Geographic – most likely a fishing show.

We're All Connected

But this wasn’t a normal Monday. It was nearly two years after he’d joined the Be The Match registry. It was the day he was called upon to donate stem cells. It was the day he got the chance to save a life.For patients with blood cancers like leukemia, lymphoma and other life-threatening diseases, a cure exists. It exists in the veins of neighbors and in the bone marrow of friends. The cure is in the hands of the public.

Be The Match is the world’s largest community of donors, volunteers, health care professionals and researchers who deliver cures to life-threatening diseases by helping patients get the essential bone marrow or cord blood transplants they need for a second shot at life. The registry has nearly 12.5 million potential bone marrow donors and over 209,000 cord blood units on hand. It has facilitated more than 68,000 transplants since 1987, when it was called the National Marrow Donor Program; its name was changed to Be the Match in February 2009.

The organization stemmed from the love of parents with a 10-year-old daughter who had leukemia. In 1979, Robert and Sherry Graves were the first to ever agree to a bone marrow transplant from an unrelated donor. It worked — and the success inspired them to give other families the same hope for a cure.

Now, the organization is at the forefront of the effort to get patients the marrow and stem cell donations they need: According to the website marrowdrives.org, all other marrow/stem cell donation programs in the United States recruit on behalf of Be The Match, and Be The Match has cooperative relationships with many registries outside the country, too, allowing it to seek and offer matches among donors and patients on those lists.

Most people know that healthy bone marrow and blood cells are needed to sustain human life. When a major disease like blood cancer affects the marrow so that it cannot properly function, a bone marrow transplant is often the best — and for some, the only — treatment. For transplants to remain an option, people need to be informed: about their ability to access a cure — or to be the cure.

The bone marrow transplant procedure is astonishing, not only because it’s possible to destroy cancerous cells and replace them with normal ones that multiply throughout the body, improving health, but because of the emotions that are often involved, says Tina Saadat, Be The Match’s southeastern supervisor for community engagement.

“I’ve facilitated about six donor-recipient meetings myself, and every one of them becomes instant family,” she explains. “A perfect example is one we did about five years ago with a donor who lives up in Connecticut; the recipient was in Atlanta at the time. One of them is Caucasian and one of them is African American, but they consider themselves sisters.”

With a new diagnosis of blood cancer every three minutes, the need for donors is high. And while most patients assume they can find a match in their sibling or parent, approximately 70 percent of people in need of a transplant cannot, making the process nearly impossible without a robust registry of volunteers.

“This is a tissue-marker match, it’s not a blood type match. It has nothing to do with blood type,” Saadat explains. “We’re looking for someone who has similar DNA. And now that we’re kind of a melting pot of a country, there are so many mixed ethnicities out there due to mixed marriages producing children of mixed backgrounds, it makes it even harder to match a patient.”

But that’s also what makes it so remarkable.

Despite the successful match of the Caucasian and African American pair, who shared a “very, very rare African gene,” Saadat says it is “highly unusual” for two people of different ethnicities to match.

“When the two of them met, there were obviously some questions. Many hundreds of years ago, there could have been some overlapping between the Caucasian family and this African American gene pool,” Saadat explains.

“We’re all, to a certain degree, connected.”

One of Those 'God' Moments

Photo by Amy Arrington

Sarah Langville donated bone marrow to a 3-year-old boy; he is now 11 and doing well.[Photo by Amy Arrington]

Even when there is a match found within a family, some refuse to donate to a loved one, partially due to a fear of the procedure — which, nowadays, is simple and risk-free: highly uncomfortable, but hardly considered dangerous. Some donors are back at work within one day of the donation. When no family match is available, patients rely on Be The Match. In order to survive, they place their lives into the hands of strangers.In 2006, Sarah Langville was making her way through the GE Healthcare Institute in Milwaukee, Wis., prepared to give up. As a GE Healthcare employee, Langville worked in this building every day. Today, however, she wandered through maze-like passages without the slightest sense of direction, her patience washing away faster than the dirt on the sidewalk during an afternoon storm.

Long a donor for blood drives, Langville was headed for a cheek swab drive being held by Be The Match; cheek swabs are how the organization collects DNA from potential donors to look for matches. Langville was on the verge of turning toward to door to leave, until something stopped her.

“Something at that moment was like, ‘You’re here, you might as well just do it.’ I think that was one of those ‘God’ moments.”

Two months later, Langville got a phone call. She was a potential match for a 3-year-old boy.

At the time, peripheral blood stem cells, or PBSC, which are taken from a donor’s blood before the rest of the blood is returned to his or her body, were not a common donation method; today, approximately 77 percent of donors donate stem cells this way. Instead, after her phone call, Langville began preparing to donate liquid bone marrow, which would be surgically removed from her hip while she was under anesthesia.

“I was going to donate at the end of November, and a month before that, you have to sign this paper, and that was one of those moments when all of a sudden it’s very real what you’re doing,” Langville recalls. “You’re literally signing this paper in black and white, in very basic language, that says ‘I realize that if I don’t show up on November such-and-such a date, my patient will die.’”

When a match agrees to donate, he or she begins preparing for the transplant. For marrow donors, this simply involves showing up and going under anesthesia. PBSC donors take a regimen of a growth hormone called filgrastim, which produces an excess of stem cells in the bone marrow that are later kicked out into the blood stream. Over the course of four days, donors drastically increase their stem cell count until the day of their donation.

At the same time, the patient has been notified of the match and begins his or her own kind of preparation called “conditioning,” also known as “bone marrow preparation” or “myeloblation,” a treatment of high-dose chemotherapy and/or radiation therapy -- although now sometimes lower-dose or nonablative chemotherapy is used. There are several reasons for this treatment: to make room in the bone marrow for the transplanted stem cells, to suppress the patient’s immune system to lessen the chance of graft rejection and to destroy all of the cancer cells anywhere in the patient’s body.

Put simply: these patients get much, much sicker.

“I had these nightmares about not being able to get to the hospital for some crazy reason,” Langville recalls, noting that throughout the entire process, her only concern was something happening to her before she was able to donate. “When you consider what the recipient is going through, living in a bubble for a month and killing off their entire immune system, it’s a lot on the recipient compared to what’s going on with you.”

Langville arrived at the hospital at 8 in the morning, and within 45 minutes was in the recovery room. After experiencing several days of soreness as if she’d “run a marathon,” Langville’s life continued as usual, but the impact she made will live on.

Although she’d like to someday, Langville has never met the little boy she saved. “I feel like the ball is in his family’s court,” she says. “When I think about all that his family went through during that time of being so, so sick, I don’t think that I’m the most important thing they need to hold on to. But it’s reassuring to know that he’s doing well. He’s thriving.”

According to Be The Match’s confidentiality policies, in most cases, donors and patients are allowed to have “anonymous contact” during the first year after the transplant — they may send cards, letters and gifts without revealing their identities, or simply rely on Be The Match employees to receive health updates. Langville receives an annual Christmas card from her patient’s family, a consistent visual reminder of the growth and life that, without her, would not have been possible.

Despite having never met him in person, Langville speaks about her recipient with such loving tenderness one would assume they were related by blood — which they are, in a way, since her blood now runs through his veins.

A Very Bleak Prognosis

“He pulled through,” Langville says, the affection in her voice unmistakable. “He’s now a little boy in school, doing well. He’s actually 11 now, so I probably shouldn’t call him a little boy anymore,” she laughs. “Even now, even never having met him, just knowing that I happened to be at the right place at the right time for someone in their life, that’s just a little bit of God working. And that’s fate.”In another part of the country, Karen Gibson was the pinnacle of young health. As an outside sales rep for a company in Savannah, Ga., she was on her feet a lot, traveling, stretching her legs. She was 38. She was healthy.

Photo courtesy of Karen Gibson

Karen Gibson, pictured with her husband, Chris, was helped by a cord blood transplant after she was diagnosed with myelofibrosis.[Photo courtesy of Karen Gibson]

She spent countless hours chasing after her three children, aged 13, 9 and 3, driving them to sports practice and cheering from the sidelines. In her free time, she volunteered at church once a week and spent time with her husband. She donated her platelets to the American Red Cross. Until one day, they turned her away.

“They told me my iron was too low,” Gibson explains. “So I started taking some iron supplements, and I went back a while later to donate again, and they turned me away again. So I set up an appointment with my doctor to see what I needed to do to get my iron back in check, and they did a complete blood work on me. It came back completely abnormal. Nothing was right.”

On March 6, 2012, Gibson was diagnosed with myelofibrosis, a rare cancer that affects the bone marrow, disrupting the body’s normal production of blood cells.

“It was a complete shock,” she says. “First of all, we had never heard the word myelofibrosis before, so not only did we learn a new word, but we learned that I had this new word, this rare disorder.”

Within the next few weeks, Gibson and her husband would learn more. Her doctor informed her that myelofibrosis did not have any treatment plans. They took to the Internet, desperately searching for answers, but “found out that what our doctor was saying was accurate,” Gibson says. “It was a very bleak prognosis.”

Her survival was estimated at two to four years. She would never see her children get married, would miss the start of first grade for her youngest and college orientation for her oldest. Her husband, who is in the military, would be a single father of three. Myelofibrosis is typically diagnosed in people in their 70s or older; often, the disorder is brought on by treatments that people have received for a previous form of cancer, or it develops from a myelodysplastic syndrome, in which immature blood cells in the bone marrow fail to mature into healthy blood cells.

At 38 years old and otherwise completely healthy, Gibson’s myelofibrosis was “primary,” making it even more rare and difficult to treat.

With very few options, they traveled to Minnesota to consult with Aref Al-Kali, a Mayo Clinic hematologist and myelofibrosis expert. It was there that they learned about Be The Match, and a possible cure through a bone marrow transplant.

The process for finding Gibson a match was grueling. They checked her brother, who was not a match. They held multiple bone marrow drives, recruiting over 300 potential donors to add to the Be The Match Registry, but none were eligible to donate to her.

All the while, her health was declining. In January 2013, she was receiving blood and platelet transfusions on a regular basis, no longer able to keep up with the busy schedule that consumes the days of a working mother of three.

“We decided to do a half match transplant,” Gibson says, which means that the donor’s tissues are only half identical — not ideal, but better than no transplant at all. “My mother was going to be my half match donor. As we were preparing for that, we were on the road to Atlanta to begin the transplant process, and I received a call from my doctor saying that my mom had antibodies that were incompatible to me, and she could not be my donor. My heart completely sank.”

Prepared to turn the car around, her doctor then informed her that she had another option — one he hadn’t mentioned before. They had searched the umbilical cord blood bank through Be The Match and had found a cord blood unit in Europe that was not only an exact match, but was a large enough unit that it would be the only unit she needed to complete the transplant.

“I was overjoyed,” Gibson says, the relief still audible in her voice. “I pulled over to the side of the road, and I cried. I cried out of shock and excitement. Every emotion you can imagine, I experienced in that moment.”

When Gibson had given birth to her own children years before, she’d known she had the option of putting their cord blood in a bank; however, “the fees associated with that were fairly expensive,” so she didn’t do it. She was unaware that she could have donated their cord blood to an organization like Be The Match for no cost at all.

Umbilical cord blood plays an important role in the treatment of leukemia, lymphoma, sickle cell anemia and other life-threatening diseases. After a baby is born, the blood is collected from the umbilical cord — not the baby — and tested, frozen and stored. Cord blood transplants offer some advantages to patients: unlike stem cell donations, they don’t need to be a perfect match, and they are associated with a lower chance of GVHD and viral infections.

While bone marrow and PBSC donors have the option to reveal their identities to their recipients after one year, cord blood donors always remain anonymous, so the identity of Gibson’s live-saver will forever be a mystery. Still, that doesn’t stop her from wondering.

“I think about them all the time,” Gibson says. “I tease with my family because I love Italian food, especially after my transplant, so I insist that my baby donor was Italian,” she laughs. “It’s fun to fantasize.”

Saadat, from Be The Match, says this recipient fantasy is common.

“We’ve had a lot of recipients that will keep a journal, and then that way, if they ever get the opportunity to meet that person, they can share their thoughts and feelings,” Saadat says.

In addition to wondering about the identity of her donor, Gibson finds herself yearning to get inside the person’s head, wanting to know what made him or her donate in the first place.

“But since I can’t,” she says, “the best way I can share my gratitude to that family is to tell others about how their decision to be a donor has impacted my life. If I could meet them, I would say ‘Thank you, from the bottom of my heart, for making the simple decision to donate.’ There aren’t enough words to describe my gratitude to that family. Because they made that huge decision, I get to be here on this earth to watch my three beautiful children grow up. And I absolutely cherish every moment and every day that I get to be with my family.”

Like many recipients, donors also tend to be interested in spreading the word about Be The Match.

“After my donation, my brother joined the registry,” Langville says. “Last year, he was matched to a recipient as well, I believe to a 38-year-old father in North Carolina. Just a couple of weeks ago, after my brother’s donation, he then hosted a drive at his church and someone else matched. It’s really a prime example of paying it forward.”

Saadat likes to urge prospective donors to look at the process as if they were in a recipient’s shoes. “I would like the public to think ‘This could be me,’ or ‘This could be somebody that I care about, and boy, how I would really like to have a match in the registry if that was the case.’ Because a lot of our patients are coming to us desperate,” she says.

“The exciting thing about Be The Match is they’re not an organization that is in search for a cure,” Gibson echoes. “They have the cure. They are the cure.

If you are in need of a bone marrow or cord blood transplant, call Be The Match at 1-888-999-6743 or email patientinfo@nmdp.org to learn about payment options and insurance coverage, or to seek support or education. Those interested in joining the Be The Match registry — ideally adults ages 18 to 44 — can sign up by visiting join.bethematch.org or registering at community donor drives; the full medical requirements for joining can be viewed at bethematch.org. Those unable to join can consider donating money or their children’s cord blood; learn more at www.bethematch.org/support-the-cause