One in 25 Million: Marrow donor represents the need for more potential marrow donors—and the hope they offer blood cancer patients
The world’s bone marrow donor registries hit a significant milestone this year when the number of potential volunteer bone marrow donors listed on global registries reached 25 million people—about half of which are on the national Be The Match Registry.
One of those 25 million people is Linda, a 33-year-old mother of two from California who joined the registry in 2011.
Her motivation was very personal—her brother was fighting for his life and needed a bone marrow transplant. Linda hoped to be his match. When Linda learned that she was not a match for her brother, it was heartbreaking. She couldn’t save him and he didn’t survive. But, Linda was still on the registry. And two years after registering, she received a call out of the blue. She wasn’t a match for her brother, but she was a match for someone else—a middle-aged woman in need of a cure.
“Never in a million years did I think I would be a match for someone else,” Linda said. “The call hit very close to home and brought back memories of my brother. After speaking with my family, I decided I would go forward with the process in honor of him.”
Linda underwent a nonsurgical peripheral blood stem cell (PBSC) donation procedure and received a letter about one month later: The transplant was a success, and her cells had engrafted with the patient.
The news brought Linda to tears. “I was overwhelmed with joy,” she said.
Linda is grateful that she had the opportunity to help save a life, and feels like her brother really made her life-saving donation possible. Every story like Linda’s—every person who joins the registry and those that are called to donate to a patient—give patients hope and inspiration.
But even with 25 million people on worldwide registries, more donors are needed. 25 million people represent less than 1% of the world’s adult population—and 1% is not enough. Someone is diagnosed with a blood cancer every three minutes, and many of them rely on the worldwide registries to find a matching donor.
Donors have saved hundreds of thousands of lives through bone marrow transplants—but an equal number of patients couldn’t find a donor match. Patients are most likely to match someone of their same race or ethnicity, so we need the most diverse registry possible to give all patients an equal chance for a life-saving transplant.
As Linda’s story shows, one person is all it takes to find a matching bone marrow donor for a patient. “You don’t just make a difference in the life of the patient, but you also impact everyone around them,” Linda said. “You never know, you could be someone’s hero.”
Like Linda, you have tremendous power. You might be the only person in the world who is the right match for a patient with blood cancer. You could hold the key to a life-saving treatment. You could cure cancer. No matter how big the registry gets, we will always need you.
We have no time to lose. You could help us provide a cure for a patient who is searching for a matching bone marrow donor right now. Please visit BeTheMatch.org to learn more and join the Be The Match Registry of potential bone marrow donors.
Their Gears and Greens Golf Tournament included a round of golf, “ladies luncheon” boutique fashion show, raffle, silent auction, live auction and guest speaker. The guest speaker was 19-year-old Danielle who is searching for a marrow donor to save her life. Her compelling story touched the hearts of all 150 golfers, attendees and over 25 event sponsors. Coregistics’ generous support made it possible for 100% of the proceeds, $100,000, to go directly to supporting Be The Match On Campus.
Looking to the future, Coregistics has pledged ongoing support for Be The Match. They hope to grow their 2015 golf tournament and are offering their $100,000 this year as a national sponsorship and to match fundraising projects that chapters hold on their campuses. They have pledged their ongoing support for Be The Match and Be The Match On Campus. We are thankful for their dedication and commitment to saving lives.
It all began when two high school students, for their senior project, approached John’s football team at the College of William and Mary. The students presented information about the impact of marrow donation and encouraged the players to join the Be The Match Registry® — if it was a commitment they felt was right for them and they would honor if called upon as a match. Moved by the experience, every player who was not already a potential donor, joined the registry that very day.
Six months later, John got the call that he was a match for a patient in need of a life-saving marrow transplant. For John, being chosen was a privilege and an honor. “I’m not usually the person to win anything like a raffle or anything like that. It’s cool it got to be this.” John is among the 1 in 500 people who donate marrow.
John was fully committed to saving a life, but donating meant that he would have to sit on the sidelines for a brief period of time as he prepared for donation and post donation. In
John’s case, the patient’s physician requested a peripheral blood stem cell (PBSC) donation. This is one of two methods of collecting blood-forming cells for marrow transplants. PBSC donation is a nonsurgical procedure, called apheresis, which is similar to donating platelets. Prior to donating, PBSC donors receive injections of a drug called filgrastim to increase the number of blood-forming cells in their bloodstream. His doctor explained that, though donating PBSC was low risk, he would like need to sit out of a few practices and games during a key part of the football season. Thankfully, John’s team and coach fully supported him. “The choice between a football game and saving someone’s life … It was a no brainer,” says John’s coach.
John hoped to schedule his donation during an off week in the season, but stressed that the patient’s health condition and schedule was his first priority. However, as John approached his donation day, there were some schedule changes which can occur when the patient is not healthy enough to receive a donation, at the scheduled time. For John, that’s when the fragility of the situation really hit home.
Once identified as a match for a patient, the donation process takes 20-30 hours over a 4-6 week period where a Be The Match donor contact representative is with the donor through every step of the journey. If a donor needs help coordinating their schedule with school or work, we also provide that support and assistance.
The donation finally took place in October, 2014. When asked about the donation day, he says that “it was a very simple procedure” and he watched a few movies while it took place.
Since donating, John has graduated from college and was recently married. Looking back on his experience, he is honored that he was given the opportunity to save a life, but stresses that he is not a hero. John says, “It’s not about someone who gave up two weeks of football. It’s about the people who continually fight this battle that is almost behind the scenes.” He hopes that his actions will inspire others to open their eyes to the cause. “So many lives have been affected by cancer. It’s all around us. Together, we need to step up and do more.”
Lisa had a lifestyle many people dream about. She and her husband, Jim, both worked for General Mills in Switzerland and were busy raising their son and twin daughters abroad. An active mom with a high travel job, Lisa skied in the Alps of Switzerland, hiked the mountains of Italy and enjoyed experiencing life around the world. Suddenly, everything fell apart. In June 2010, Lisa was diagnosed with Philadelphia chromosome (Ph) positive acute lymphoblastic leukemia (ALL) – fast-growing cancer of a type of white blood cells called lymphocytes. Lisa, her husband and her Swiss medical team quickly created a treatment plan and, within two days, she started chemotherapy and a search for an unrelated marrow donor was launched (none of Lisa’s three siblings were a match).
Within a few months, Lisa and her family moved back to Minnesota and she continued her treatment at the Mayo Clinic where a matching donor was found through Be The Match Registry. On December 2, 2010, Lisa received her life-saving marrow transplant. The transplant was a success and a biopsy nine months later confirmed she was cancer-free. “There’s such a sense of relief once a donor is identified,” Lisa says. “It gives a patient the opportunity to move forward, to achieve the best chance for remission.”
Team MUD Blood
Less than a year after her diagnosis, in an effort to help others heal and to build her own stamina, Lisa organized a team for Be The Match Walk+Run. Her team, the MUD Bloods, which stands for Matched Unrelated Donor, was the top Minneapolis fundraising team in 2011 and 2013. Since 2011, they have raised more than $85,000 and more than 150 people have participated in Be The Match Walk+Run because of Lisa’s involvement.
This year, in honor of her five-year post-transplant anniversary, Lisa has decided to go all out. The MUD Blood’s goal is to raise $20,000 to bring their total fundraising efforts above $100,000. To make the anniversary even more special, Lisa has invited her marrow donor, Rike, a young woman from Germany, and her doctor, Mark Litzow, to cross the finish line with her on the day of the event.
Extending Her Impact
Lisa’s passion and involvement with Be The Match continues to grow. An outstanding ambassador for the organization, here are some of the many ways she has inspired others:
- Be The Match Twin Cities Leadership Council member
- Shared her story at the Atlanta Soiree and the Minneapolis Gala, where she met her donor for the first time.
- Spoke on behalf of the organization for corporate workplace giving campaigns and television interviews
- Hosts registry recruitment events through her connections at Georgia Tech, General Mills and elsewhere
This Women’s History Month, we’re thankful for all Lisa has done to support our life-saving mission!
If you’re interested in getting more involved with Be The Match, visit BeTheMatch.org/Support-the-Cause
Back in the spring of 1996, I remember being emotionally affected by the news coverage of baseball player Rod Carew’s daughter who was dying of leukemia. The media was desperately making pleas for people to join the marrow registry in hopes of finding a donor not only for his daughter, but also for other patients in need of a bone marrow transplant.
That year, all I wanted for my 15th birthday was to join the marrow registry, but I found out that I could not join the registry until I was 18. I was disappointed, but shortly after my 18th birthday, I joined the registry and the wish I made on my 15th birthday was finally fulfilled.
In April 2008, eight years after joining the registry, I was contacted by Be The Match on behalf of a 14-year-old boy who was in need of a marrow transplant. I learned that I was identified as a potential match based on the initial screening tests and subsequently went through additional testing, for which I gave some blood samples. I was also told that other potential donors were contacted for additional testing as well, so I simply waited.
Called as a match
At the end of May, I was contacted by Be The Match. The donor center representative left a message on my cell phone that said,“Erin, the doctors have decided that you are a perfect match for this patient.”
The first step to becoming a donor was to attend an information and counseling session. The donor center representative made sure that I still wanted to proceed with the transplant and that I was mentally stable enough to undergo the process.
The second step for me was to meet with a physician for a physical exam to ensure that I was healthy enough to undergo surgery. I passed my physical exam and the transplant date was set for July 10.
Donation postponed, feelings of guilt
Everything seemed to be on schedule until June 27. I was saddened to learn that the patient’s condition deteriorated and he was now battling a type of leukemia that he did not have before. He would have to undergo additional chemotherapy and radiation treatment before receiving the transplant. I was told that the transplant would be postponed for approximately two months.
Initially, when I heard that the patient’s disease had progressed to leukemia, I was ridden with an unnerving sense of guilt. Somehow, I felt that I had failed this child and that if we could have just done the transplant sooner, this would not have happened. During my first counseling session, I was told by the donor center representative not to become emotionally attached to the patient or situation, that I did not give this child the disease and that I was doing everything I possibly could for him. That is easy to say, but much harder to make yourself believe, especially when there is a 14-year-old child involved.
The more I began to pray about this situation and acknowledge God’s perfect timing for everything, the more the guilt was released from my spirit. I came to accept the fact that I had done all that I could do and that the most important thing I did was answer the initial request for donation and gather the strength and courage to proceed.
At the end of October, I got the call I had been waiting for saying that the recipient and his family were ready to proceed with the transplant again. The new donation date was set for November 24th (and 25th). The doctors no longer wanted me to go through the surgical marrow donation, but the peripheral blood stem cell (PBSC) donation instead, which, unfortunately, required more of a time commitment on my part and had a more intense preparation. The recipient’s physicians thought that due to the change in his condition in July, he would be less likely to reject the PBSC than the marrow.
Not that I was looking forward to the surgical procedure initially, but that definitely seemed like an easier procedure than the PBSC collection, especially since I would have been sedated! Truthfully, I was a little concerned about the time that would be required for the PBSC donation and whether I would be able to stay still on both days with needles in my arms for four to six hours. I had said, however, that I would do whatever was in the best interest of the recipient and I intended to live by those words.
Injections to prepare for donation
The donation and transplant took place during the week of Thanksgiving, as planned. Five days before the transplant, I began a series of daily injections of a stem cell stimulant that would promote blood stem cell maturation and the movement of those cells into my bloodstream. A home health nurse came to my condo every morning to give me two shots of this medication. That stuff burned! I have always been able to tolerate needles/injections pretty well, but even I almost jumped out of my chair after the first injection! Thankfully, over time, the injections became less painful.
Donation day one
On the morning of the first day of the donation, I woke up, got down on my knees, and prayed. I asked God to give me the strength to go through with this procedure, not knowing exactly what was going to happen. My dad accompanied me to the hospital and when we arrived, we were greeted by Ms. Karen, the nurse who took care of me, and Ms. Eileen, my donor center representative. After the procedure was fully explained to us and I was comfortable in the bed, I was given the last set of injections.
Immediately after receiving those shots, an IV and return line was placed in my right arm. My left arm was the “draw” arm from which the blood would be extracted. When Ms. Karen was inserting the draw line, she “blew my vein,” meaning that she went all of the way through the vein. That vein could no longer be used and she had to stick me again to find another vein. Needless to say, I was not happy with Ms. Karen, but I felt bad because she was so apologetic and really nice. After a few more minutes, I was completely hooked up to the apheresis machine and the donation process began.
Throughout the procedure, 12 liters of blood circulated through the machine. The machine spun my blood in a centrifuge, separated the stem cells from the blood, and then returned the rest of the blood back to me. The stem cells accumulated very, very slowly in the collection bag. Due to various factors, it took five and half hours for the collection process to be completed on the first day. The most difficult part about the procedure after being hooked up to the machine was being still for several hours. I was not in any pain, but I really wanted to move my arms and I could not do so.
It was also quite humbling, yet incredibly comical having my dad help me eat and drink. He can turn any situation into a funny one, and this was no exception! After the donation process ended for the day, I was unhooked from the machine and finally able to move my arms. In terms of how I felt, I was just really, really tired and experienced a fairly intense tingling/numbing sensation that was caused by the anticoagulant I was given.
Donation day two
The second day of the donation procedure was the same as the first. Although I knew what to expect, the needle sticks were more painful. I think that my veins were just tired from the previous day. Approximately three hours into the procedure on the second day, the access pressure in my left vein dropped below what was considered acceptable for donation and Ms. Karen pressed down on the needle in my arm trying to restore the pressure, and that was PAINFUL. Even though she was trying her best to avoid having to remove that needle and stick me again, it hurt. I did not want another needle stick either, so I was praying that my vein would cooperate and hold up for the last two hours. Thankfully, after several attempts to reposition the needle, the pressure increased and I was able to avoid another needle stick.
I was not as tired and did not experience the same level of numbness/tingling at the end of the second day, which was great.
The total amount of cells that were collected was about half a liter. It is amazing that it took so long to collect 250 milliliters per day. I remember looking at the cells in the collection bag after day one and Ms. Karen said to me, “That is liquid gold.” Yes, the cells were straw in color and did have almost a golden-like appearance, but that phrase was referring to much more than the color of the cells. For the recipient and his family, those cells were truly worth more than gold. Those cells literally meant life or death.
The answer to somebody’s prayer
On the Sunday before the transplant, my pastor made a statement that stuck with me. He said, “Lord, help me to be the answer to somebody’s prayer.” I thought about this statement for a while. Maybe I was the answer to this boy and his family’s prayer. If so, what an incredible charge that I was granted.
Editor’s note: More than a year after the transplant, Erin and her recipient both signed consent forms agreeing to share their contact information. She has since spoken with her recipient by phone and learned that he was doing well, returning to school and regaining health.
Every year, Kevin and his fellow Be The Match immunogenetic specialists work closely with transplant centers to provide guidance on thousands of patient searches. When a patient with a blood cancer or disease seeks a transplant, one of the first steps involved is finding a matching donor. That’s when Kevin steps in.
His department helps transplant centers search the Be the Match Registry® and other cooperative registries around the world – totaling almost 25 million donors worldwide. They also conduct research projects aimed at reducing patient time to transplant.
There are many elements that go into finding the best matched donor for a patient. Kevin and his team apply their immunogenetic expertise in the science of matching.
“Being able to take part in this process, understanding the complexity of the situation and witnessing all the people who put so much effort into helping patients is very fulfilling,” said Kevin. “Most importantly, once we identify that a potential donor is a match, that individual’s commitment is critical.”
This March, Maryland resident, Linda, will be one of seven transplant advocates who will travel to Capitol Hill on behalf of the National Marrow Donor Program® (NMDP)/Be The Match®. Their mission: Urge lawmakers to increase vital funding to help more patients survive blood cancers and other diseases.
Linda, and the six other patient and donor advocates, will ask Congressional members to approve a small increase in funding for the NMDP/Be TheMatch, which operates the national Be The Match Registry® through a successful public-private partnership with the federal government.
Increasing the federal appropriation would allow the NMDP/Be The Match to recruit more donors and further expand the diversity of the registry. Federal funds also go toward helping patients navigate the complexities of the health care system when preparing for transplant, as well as supporting research to discover and apply the best therapies, and improve patient outcomes.
In 2007, Linda was diagnosed with acute lymphocytic leukemia (ALL), a type of cancer in which a certain type of white blood cells prevents the body from making enough red blood cells and platelets. Linda’s doctors told her that a bone marrow transplant was her only chance of a cure, but like most patients, the mother of three young children did not have a donor match within her family.
Linda’s medical team turned to the Be The Match Registry® in hopes of finding an unrelated donor. Ultimately, Linda’s doctors determined that an umbilical cord blood transplant was her best treatment option, and after months of waiting, Linda received her life-saving transplant in July 2008.
That’s why Linda and her fellow advocates also will ask legislators to increase federal funding for the National Cord Blood Inventory (NCBI). The increase would support efforts to improve patient access to innovative, life-saving transplants, including the recruitment of more minority mothers to donate their baby’s cord blood—giving more patients like Linda a second chance at life.
To learn more about our work on the Hill and to get involved, visit BeTheMatch.org/Advocacy.
Six-year-old Owen is a rambunctious little boy who is truly a “super hero.” Always outfitted in his signature cape, he, like other super heroes, has a story that first made him super. He wasn’t bit by a radioactive insect or rocketed from another planet, rather, he defeated some atypical ‘bad guys’—bad blood cells.
It all began when Paula, Owen’s mother, took one-year-old Owen to his regular checkup. A healthy baby, Paula was shocked when routine tests revealed Owen’s platelet count was severely low. Further tests were needed and, weeks later, the devastating diagnosis was official—myelodysplasia (MDS) with monosomy 7, a rare bone marrow disorder most common in adults over 60. Baby Owen’s only hope was a marrow transplant.
Devastated and shocked, Paula began to equip herself with knowledge. “I wanted to be able to talk to the doctors and not have the doctors talk at me,” she says.
With no matches in his family, Owen’s doctors turned to Be The Match®. Two well matched donors were quickly found, a young man from Germany stepped forward to give Owen a second chance at life.
His transplant was successful, but post-transplant complications—including adenovirus, a respiratory infection, and graft-versus-host disease (GVHD)—made Owen a very sick little boy. Despite the challenges, Owen remained playful and happy. “Even when he was at his lowest points and throwing up, Owen would simply pickup and move on,” says Paula. “We started calling him ‘Super Owen’ because of his inspiring will and courage.”
Owen’s resilience gave Paula courage as well. As a single parent, doctors and nurses spent time with Owen during their breaks so Paula could shower and eat. There were also financial complications, but Paula stayed optimistic and, thankfully, 118 days post-transplant, Owen was healthy enough to go home.
This May, Owen celebrates his 5 year transplant anniversary. Cured of his bone marrow disorder, he is a kindergartner who loves to wear capes and eat chocolate.
An avid supporter of Be The Match, Paula gives thanks for his life every day. “I don’t know if I’ll ever not feel like a cancer mom, but together we are adjusting to our new normal,” says Paula.
Join us to hear Paula share their inspirational story at our Fourth Annual Be The Match Breakfast, on March 12, 2015.
From “all-natural” supplements and special diets to meditation, massage and more, CAM can take a lot of different forms. Some are generally safe, while others can hurt you. The risks are especially high when you have a weakened immune system, have graft-versus-host disease (GVHD) or are taking prescription medicines.
Before you try anything new, be sure to talk to your health care team, including your doctor, pharmacist and registered dietitian. They can help you decide if a new approach is safe or can harm you.
Does CAM work?
The answer is maybe. When used with your doctor’s recommended care and advice, some people report CAM helps them manage their symptoms, reduce stress and improve their sense of well-being. Other people report no benefit.
Is CAM safe?
CAM practices that are generally safe include those that promote relaxation, well-being and movement, like:
- Meditation and prayer
- Guided imagery
- Art and music therapy
- Tai chi
Potentially dangerous practices include those that go against your health care provider’s advice, like:
- Quitting or substituting a doctor-recommended medicine or treatment.
- Starting vitamins, supplements or herbal products. They could make your prescription medicines not work, or increase the likelihood of dangerous side effects.
- Using certain lotions or getting too much light or sun, which could make GVHD of the skin worse.
Use caution when considering self-care practices outside of those recommended by your health care provider, like:
- Special diets. Certain foods or diets could actually be harmful. For example, even something that seems harmless, like grapefruit or grapefruit juice, can actually cause problems with some medicines.
- Acupuncture. When not performed in the right way, acupuncture could cause harm, including infections and bleeding.
- Special products or equipment, such as suspension exercise devices, which could be harmful for patients who have bone or joint problems from their disease or the transplant process.
- Chiropractic care. While often safe, it can be harmful for patients whose disease has affected their bones or for those with weakened bones from the transplant process. Talk to your doctor before having any chiropractic care.
There are a number of credible organizations that offer online resources on safety, benefits and risk of CAM including:
- National Center for Complementary and Alternative Medicine (NCCAM)
- Office of Cancer Complementary and Alternative Medicine (OCCAM)
- National Cancer Institute
Remember, no matter which CAM practices you’re considering, do your research first and talk with your health care team before you start.
There are two methods of donation: Peripheral Blood Stem Cells (PBSC) and Marrow. PBSC donation is a nonsurgical procedure that takes place at a blood center or outpatient hospital unit. Marrow donation is a surgical outpatient procedure that takes place at a hospital. Because Altonet donated marrow, she was given anesthesia and did not feel any pain throughout the procedure.
While she was sore for several days following the donation, she was able to go back to work within two days. Several months after her donation, Altonet learned that the recipient was doing well and was released from the hospital just months following the transplant.
Of her recipient, Altonet said, “the one thing she taught me was how to love a stranger. I don’t know her, but I love that she is able to endure through such a difficult time. I prayed for her more than I prayed for myself or anyone else in a long time.”
Lending Her Voice
Altonet has a compassionate heart and a passion for singing. In fact, she’s competed on three national talent shows — Star Search, American Idol and Showtime at the Apollo.
Now she is lending her voice to help others by encouraging more people — especially those from the African American community — to follow her lead by joining the Be The Match Registry and saying yes if called as a match for a patient.
Before going through the donation process, Altonet heard a lot of common myths about donation —that it is painful and dangerous. “I want people to know that each individual’s experience is uniquely theirs. Don’t listen to what you may have heard — speak with people who are able to give you correct information about the process. It’s a rewarding experience and if you are ever selected to donate bone marrow, you should definitely consider it.”
Like Altonet, you could be the cure for someone with a disease like sickle cell anemia or a blood cancer like leukemia by donating bone marrow. It only takes a few minutes to join the Be The Match Registry. If you match a patient, you could be the only one out of millions who can save that patient’s life. Learn more about donation.