Posts tagged ‘Be The Match’
“How many brothers and sisters do you have?” a doctor from Hadassah Medical Center in Jerusalem asked 26-year-old Adi Versano almost two years ago.
“Two sisters and one brother,” she said.
Then the doctor told her she had another “sister,” this one in the United States, and that she desperately needed Adi’s help.
This “sister” was not a relative in a traditional sense, but their genes lined up to make Versano the perfect bone marrow match for then-15-year-old Kayla Saikaly, who needed a bone marrow transplant to cure her of aplastic anemia, a condition that causes the body not to produce enough blood cells and cripples the immune system.
There was no doubt in Versano’s mind that she would help. She says she cannot remember exactly when she, during a routine blood donation, signed up for a bone marrow registry. She was 19 then, and serving in the army in Jerusalem. Signing up was simply the right thing to do.
She signed up, and then didn’t think often about the registry or her potential to be a donor.
She began studies to become a special education teacher, choosing to specialize in working with children who have special needs because she feels she can truly make a difference in their lives. These students become like family, she says. She also started working as an assistant kindergarten teacher.
Then, in the year before what she describes as “the call that changed my life,” cancer hit close to home. » Continue Reading
Signing up to be a bone marrow donor, being selected as a match, undergoing blood tests, then driving 180 miles for the procedure, all for someone she never met, does not a hero make – not in Antonia Klyn’s book.
“Our modern medicine offers so many possibilities, we have to use them,” says the matter-of-fact 22-year-old college student, who lives in Lauteral, Germany. “In my opinion, healthy people should help ill people … I’m happy that I did this, but I don’t see myself as a lifesaver or something.”
At least one person would disagree: The man she saved nearly 6,000 miles away.
Until today, Klyn knew only that she was a close match for an adult man who badly needed a bone marrow transplant. The rest, she says, was simply a matter of doing the right thing.
Klyn is studying media and theater science at the Friedrich Alexander University in Erlangen-Nürnberg. Several years ago, she’d heard news reports about the need for bone marrow donors, and the next time she donated blood, she signed up to be a blood marrow donor.
“I don’t have relatives or friends with cancer,” she said. “I just thought it’s the right thing to do. I’m a young, healthy woman, and I wanted to help somebody who needs my help. And, of course, I know that there is always the possibility that someone in my family or one of my friends gets ill. If that would happen, I would hope that there is a donor.” » Continue Reading
Some bone marrow transplant recipients rely on the generosity of unrelated donors to provide the lifesaving donations necessary to cure their cancer. In every case, patients are grateful. For some, the donation bonds families who were once strangers.
That’s the case for Craig and Laura Sowers and for Darren Bassler, who saved Laura’s life with a bone marrow donation. The Sowers live in New Mexico, and Darren is a New York resident. They met years ago and have remained friends. They will attend City of Hope’s Bone Marrow Transplant Reunion this year to celebrate an important anniversary: 10 years since Laura’s transplant.
Craig Sowers tells the story in his own words:
The phone rang just after dinnertime. The caller ID said New York. I handed the phone to Laura. I heard her say, “Darren? THE Darren?”
Our year of censored communication had expired just a few hours earlier. We had received a call from the matched unrelated donor (MUD) program director of City of Hope. So had Darren.
It had started for Laura and me two years and five months earlier with Laura’s diagnosis of leukemia. For Darren, it had been five years since he had lost his wife, Lori. She had died after a year and half battle with cancer. The loss was devastating and left him with their three daughters: One was 7 at the time and their twins were 3 years old.
Somehow, life went on and Darren continued work at the plant in upstate New York where he had been employed for 17 years. The plant owner had extended every benefit possible to Darren and his family during his ordeal. At some point during the next year, his workplace hosted a drive to register potential bone marrow donors. Darren gave a blood sample, then he forgot about it. » Continue Reading
For many patients with hematological cancers, transplantation is their best – and sometimes only – chance at a cure.
These lifesaving hematopoietic transplants use bone marrow, stem cells or cord blood cells to replace a patient’s faulty cells, which are critical to a healthy and functioning immune system.
Each year, thousands of patients rely on the generosity of anonymous donors to provide the cells they need for transplantation, as family members are not always a match. At City of Hope, between 500 and 600 bone marrow transplants are performed each year, and in almost half the cases, an unrelated donor is needed.
“Thousands of patients each year would benefit from a transplant from an unrelated donor, but unfortunately, many of these patients still do not have a match,” said Jill Kendall, program director for Be the Match at City of Hope. “It’s important to increase the number of people on the bone marrow registry and add diversity. There’s an increased need for people of mixed ethnic background and minorities to join the registry as they are underrepresented.”
More than 6,500 bone marrow, stem cell or cord blood recipients, their families, caregivers and donors are poised to convene at the Bone Marrow Transplant Reunion on May 9, City of Hope’s 38th celebration of these patients and the people who gave them a lifesaving gift.
Be the Match offers the following guidelines and information for people interested in potentially becoming hematopoietic cell donors.
What’s the first step?
The first step to becoming a bone marrow donor is to join the Be the Match Registry, operated by the National Marrow Donor Program, a nonprofit organization based in Minneapolis that operates the largest and most diverse registry of volunteer hematopoietic cell donors and umbilical cord blood units in the U.S. Potential donors provide a swab of cheek cells using a kit either at an in-person drive or through the mail if you join online at cityofhope.org/bethematch.
What’s the commitment?
Donating is always voluntary. As a member of the registry, you are asked to keep your contact information updated, inform the registry if you have significant health changes or if you change your mind. In addition, please respond quickly if you are contacted as a potential match. Agree to donate to any searching patient who matches you, and stay on the registry until your 61st birthday – or until you ask to be removed. Respond immediately if you do not wish to donate, so the search for another donor can continue without dangerous delays for the patient. » Continue Reading
When a child is diagnosed with cancer, friends and relatives of the family often don’t know what to say, what to do, how to react. Some visitors linger for hours in the child’s hospital room, further exhausting already weary parents. Others pose grotesquely rhetorical questions: “Don’t you wish this wasn’t happening?”
Ken and Diana Wolfrank have seen and heard it all. Their son, Gavin, was diagnosed with acute lymphoblastic leukemia before his first birthday. The Wolfranks recently shared their family’s story, as well as their advice for other parents in similar situations, via Breakthroughs.
Now, the couple has some advice for friends, loved ones and visitors wondering what to do for, or say to, the family of a child with cancer. » Continue Reading
Stem cell donations are usually an anonymous gift, with people who want to help others donating their lifesaving cells simply from the rightness and joy of being able to save another human being. The donor and the recipient almost never meet – except in special circumstances. On the morning of Jan. 1, 2014, at the 125th Rose Parade in Pasadena, Calif., those special circumstances were in place. Former City of Hope patient Ben Teller met the woman who saved him from Hodgkin lymphoma: Nancy Haag.
Teller had previously spoken of his journey through the disease and transplant process, but Haag’s experience has not been shared publicly. This is her story.
Nancy Haag was attending a community fair with her family near their Newport, R.I., home in 1995, when she saw a booth for the national bone marrow donor registry.
On an impulse, she signed up.
Unlike today’s method of swabbing the inside cheek of a prospective enrollee, organizers collected a sample of her blood that day. “I remember having that big wad of gauze on me, and thinking, ‘Oh, that’s cool. Who knows, maybe they’ll call me.’”
Seventeen years later, in August 2012, they did.
By that time, Haag was a 47-year-old preschool teacher and mother of six who was living in Coeur d’Alene, Idaho.
The call came during the “crazy-busy” week before her eldest daughter was getting married.
The Connecticut Be the Match office that had organized the Rhode Island donation drive nearly two decades before was calling to let her know she was a potential match, and to ask if she would undergo more thorough testing to confirm her compatibility. Haag learned only that the patient was a male in his early 20s, and had Hodgkin lymphoma.
“I just started thinking about the fact that my daughter and my son were about that age, and certainly, I would do whatever I needed to do for this young man to have a chance.”
Haag already knew about the ravages of Hodgkin lymphoma. When a dear friend and mother of a little boy in her preschool class was diagnosed with the disease years before, “I went through the journey with her,” Haag said. The friend survived chemotherapy and an autologous transplant, in which her stem cells were purified and infused back into her.
In the frenzied days before the wedding, Haag took time to have her doctor draw vials of her blood, then, meticulously following “really explicit directions,” she FedEx-ed her specimens back in a specially designed box packed with blocks of ice.
“I was still thinking they’re probably looking at 10 different people and there’s no way it will be me,” Haag recalled.
Growing up, Shawn Ahdoot wanted to be just like the superheroes he saw on television, helping save lives. So as an adult, that’s what he did: He signed up to become a bone marrow donor.
And then he waited. He went about living the normal life of a 19-year-old: Attended classes at California State University, Northridge, worked independently as an email marketer and then graduated with a degree in marketing in 2011. Soon after, he became the marketing director for Colocation America — a company dedicated to server hosting and search engine optimization — and an agent for Total-Apps.
A few months ago, the call came. He learned his marrow was a match for that of a cancer patient struggling with leukemia. Despite his almost paralyzing fear of needles, Ahdoot came through.
“What people don’t realize is that they have a chance to put the cape on and answer the call,” said Ahdoot in an interview recently, a few days after his donation. “They have a chance to be a hero, something that many feel they can’t do because of their natural human strength. But what they don’t realize is that natural human strength along with their bone marrow can be the difference between life and death.”
Ahdoot had registered with Be The Match registry, which now has more than 9 million members. For people with blood cancers like leukemia and lymphomas, sickle cell anemia and other life-threatening diseases, donations of blood marrow are vital.
Because of his Iranian descent, Ahdoot’s registration was especially valuable. Minorities make up only 25 percent of the registry, says Cheekswab, an organization that encourages their participation. As a result, minorities have only a 66 to 73 percent chance of finding a matching donor through the registry, which is considerably lower than that of Caucasians, who have a 93 percent chance of finding a match.
As a veteran Los Angeles city firefighter, Gus Perez thought he had experienced it all – “from bringing people into the world to seeing them leave this world – and everything in between,” including the L.A. riots and the Northridge earthquake. Ten years ago, however, he was blindsided.
Applying for a transfer to the Hazardous Materials Unit in San Pedro, the 41-year-old Mission Viejo resident showed up for the routine physical expecting to ace it. After all, he had mastered the rigorous demands of firefighting for nearly 15 years, he and his surfboard regularly rode the waves – and he felt healthy and strong. Instead, abnormal blood work discovered during the physical led to an unbelievable diagnosis: chronic myelogenous leukemia (CML).
Perez came to City of Hope under the care of David Snyder, M.D., associate chair of the Department of Hematology & Hematopoietic Cell Transplantation.
He began receiving the drug Gleevec, which put him into remission. Given the drug’s success, he almost resigned himself to staying on it, yet was drawn to a riskier option: undergoing a bone marrow transplant. That was the option that represented his best chance at long-term survival. » Continue Reading
One in a series of stories asking former patients to reflect upon their experience …
Christine Pechera still finds it hard to watch a 2006 YouTube video imploring people to help a young woman searching for a bone marrow donor. “My heart breaks for the poor girl,” she says. “And then I remember: That girl was me.”
The filmmaker was diagnosed with non-Hodgkin’s lymphoma in 2002 and underwent chemotherapy, radiation and an autologous transplant (a procedure using one’s own stem cells). She returned to health, but then relapsed in 2005. When the Be the Match registry failed to turn up a donor who would be compatible with Pechera’s Filipino ancestry, her friends helped her produce the recruitment video. Her search for a match was even featured on a “Nightline” segment chronicling the need for more minority donors. Finally, a Chinese man living in Hong Kong – who had never seen these videos – was identified as a match. In 2006, 37-year-old Kam Tsuen “Kent” Wong donated the stem cells that saved Pechera’s life. The two met in 2008 during City of Hope’s annual bone marrow transplant reunion, which was documented by KABC-TV. “I can’t get over thinking that it’s his blood flowing through my veins; it’s his marrow in my bones,” Pechera said. “This is the guy that saved my life.” Pechera continues to flourish. She recently completed a master’s degree in fine arts from Pepperdine University, emphasizing writing for screen and television, and also became engaged. In fact, her fiancé (now her husband) recently surprised her by nominating her for a wardrobe makeover that evolved into a life makeover on a Yahoo Web series – aptly named – “Ultimate Surprises.” We asked Pechera to look back at the time of her diagnosis and to ask herself what she knows now that she wishes she’d known then. What wisdom, soothing words, practical tips or just old-fashioned advice would she give her newly diagnosed self? » Continue Reading
Sometimes it takes one person’s tragedy to save the life of another. That’s what happened with the 1979 death of Anthony Nolan in England of a rare blood disease. Only 7 years old, he died before a matching bone marrow donor could be found for a transplant. But his case mobilized thousands to register to donate their own cells to people who desperately needed them.
More than three decades later, the bone marrow registry movement he inspired actually brought new life to a toddler at City of Hope named Gavin Wolfrank. Struggling with leukemia, Gavin needed a transplant of blood stem cells to reset his blood and immune system.
His gift would come from Catherine Benson, of England, in 2010. Benson decided to sign up as a potential blood stem cell donor because it was a family tradition: Her mother and grandmother were so moved by Anthony Nolan’s famous case that they registered as donors in the 1970s. They didn’t match Anthony, but their family legacy would eventually make a difference for Gavin, who’s now a healthy 6-year-old boy.
The impact of the three generations’ decision to donate not only spans more than 30 years, but it also brings together two continents. Marrow donation has become international.
Anthony’s mother created the world’s first marrow donor registry in the 1970s, in England. But shortly before Gavin’s transplant in California, the number of registries had mushroomed to 76 across the world.
More than two in every five unrelated bone marrow transplants worldwide involve donors and recipients from different countries. City of Hope has performed transplants using cells from throughout the world, and volunteers who signed up for the Be The Match registry through City of Hope have helped countless others.
As City of Hope transplant pioneer Stephen J. Forman, M.D., puts it: “This emphasizes how small the world has become.” Debates over the merits of globalization continue, but in the case of Gavin and so many other patients, the integration of people across national and cultural borders has brought new hope to those needing blood stem cell transplants.