“When the doctors told us Ava had leukemia, my world came crashing down. Leukemia in itself is devastating, but then to hear that she had an extremely rare form with little research on it – that was hard,” said Esther, Ava’s mother.
A precocious, active youngster, Ava had battled serious allergies throughout her life. So when a skin infection on her leg prompted her parents to take her to the hospital one day, they assumed it was from eczema. The doctors put Ava on antibiotics and ran blood tests to make sure everything was fine. What they found was a heartbreaking diagnosis of Biphenotypic Leukemia, a mixture of both AML and ALL leukemia.
Doctors determined that Ava’s best chance for a cure is a bone marrow transplant. Unfortunately her younger sister Gwen was not a match. This is not uncommon. In fact, 70% of patients do not have a match in their family. Sibilings with the same parents have only a 1 in 4 chance of being a match.
Being half Korean and half Taiwanese, finding a perfect match will be a challenge for Ava. But instead of seeing the odds as a setback, the Lee’s see it as an opportunity to help bring attention to the need to add more Asians to Be The Match Registry® – and to educate about why race and ethnicity matter when it comes to bone marrow.
“People don’t realize the need for donors, and if they do, they often fear what a bone marrow transplant entails,” said Esther. “Signing up for the registry and donating marrow – this is not something to be scared of. This is a privilege people can take to help save a life – to be a hero.”
Rallying support for Team Ava Bright
The family, along with family and friends, have been actively recruiting more people of diverse ethnic backgrounds to join the registry. They’ve hosted bone marrow drives in Ava’s honor and are also participated in the Be The Match® Walk+Run in Chicago on April 12.
The Be The Match Walk+Run brings together communities to celebrate and transplant hope. Participants raise critical funds throughout the year to help patients with blood cancers take the next step toward a life-saving marrow transplant.
You have the power to give hope for a cure to Ava and other patients. Sign up for a Walk+Run near you.
Follow Ava’s story.
As the world’s leading nonprofit organization focused on saving lives through marrow and cord blood transplantation, the heart of our mission is delivering cures for blood cancers.
Thanks to your support, we continue to:
- Facilitate more marrow and cord blood transplants every year
- Grow and manage the world’s largest and most diverse donor registry
- Support patients and their families before, during and after transplant
- Conduct research and education to expand treatment and improve outcomes
- Engage the public in our life-saving mission
Read more about how your efforts saved lives in our 2013 Report to the Community.
Celebrate moms and caregivers this Mother’s Day and give back to the Be The Match® mission at the same time.
All or a portion of the proceeds benefit Be The Match.
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2. Be The Match Miracle of a Match Earrings $25.00. www.ShopBeTheMatch.org
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10. Honor and celebrate the moms and caregivers in your life this Mother’s Day by giving an honor or memorial gift. Your contribution to Be The Match® helps patients receive the care and treatment they need for a second chance at life. Visit http://bit.ly/1n52gAr
Learn more about how Be The Match is saving the lives of people with leukemia and lymphoma at www.BeTheMatch.org
Off the field, that same grit and determination helped potentially save the life of a 23-year-old female battling leukemia.
When Paul was a sophomore in college, he and his teammates joined the Be The Match Registry® as potential marrow donors. To his surprise, four short months later Paul was identified as a match for a young woman in desperate need of a marrow transplant. He never hesitated — determined to follow through on his commitment — and went forward with the donation in May of 2011.
Stepping Up to Save a Life
On average, 1 in 500 Be The Match Registry members go on to donate to a patient in need. In Paul’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.
“I was excited about the opportunity to potentially help someone,” recalls Paul. “The donation itself was smooth. I don’t remember any pain or soreness.” Paul returned to football and his regular activities just days after the donation.
Lacing Up for Be The Match
Now in the offseason, Paul is making an effort to share his donation experience and helping raise awareness about Be The Match®. He’s forming a team to participate in the upcoming Be The Match Walk+Run in Atlanta on April 26. The 5K, 1K and Tot Trot raises funds to support marrow transplant research, help patients with uninsured treatment costs and add more volunteer potential marrow donors to Be The Match Registry.
The following content is part of our new Behind The Match series, an ongoing effort to provide a behind-the-scenes look at marrow transplant and some of the lesser-known, yet crucial ways we deliver cures for blood cancer patients.
Each year, we encounter emergency weather situations from blizzards to icy roads to hurricanes and tornadoes. Even under these extreme circumstances, Be The Match ensures that donors are able to get to their donations. Once the donation has occurred, Be The Match also ensures that our trained couriers get the life-saving cells to wherever the patient is waiting to receive their transplant, within 48 hours, anywhere in the world. Sometimes, it takes planes, trains and automobiles in order for the marrow to safely arrive at the final destination.
The Be The Match emergency preparedness team consists of 4 full time staff who devote their time to organizational preparedness and coordinate a cross functional team of about 20 staff from many departments that ensure all marrow donors, couriers, patients and staff safely make it to their destination during an emergency. The team was put in place in 2005 shortly before Hurricane Katrina, one of the worst natural disasters in history. The team continually watches the weather, natural disasters and other worldwide events—from conflicts such as that in Syria to transportation strikes in Paris—the team also receives tips from staff and partners on the ground. Once a storm system has been identified, the team verifies that it is a legitimate threat and will then pull together the decision team— a more robust team of individuals who work with transplant centers, donor centers, couriers and other logistical components. This team pulls specialized reports by location to ensure proper precautions are put in place and alternate plans are made.
The logistics team will look at which flights could potentially be affected and will often times ensure every courier has 1-2 back up flights in case there are delays or cancellations. In the event a donor or a courier is not able to fly out, alternate transportation will be put in place to ensure dangerous delays do not occur—delays that could affect the health and well being of the patient waiting for their transplant. A recent example of the great work done by this team was this past February, when winter storms plagued the East Coast. A courier needed to get to Atlanta, but the airport was forced to close due to the ice storms that hit the city. The courier was instead re-routed to Orlando and then driven to Atlanta in order to make the life-saving delivery.
With all of the hard work and planning that this team does, there has not been one patient who did not eventually receive their life-saving cells because of an emergency situation. When an emergency occurs, Be The Match is ready for the job.
In October, Tara got the call that she was a potential match for a patient in need of a marrow transplant. She had no idea her upcoming bone marrow donation would be the start of a lifelong connection that now, nearly a decade later, has permanently intertwined her life with her recipient.
Looking back on hearing the news, Tara said both she and her husband greeted the news with joy. “When I found out I was a potential match, I was training to be a physician to save lives,” she said, “who knew I would literally get to do it with part of me.”
In December of that same year, Tara’s recipient, Stewart, received his life-saving bone marrow transplant at The University of Texas M.D. Anderson Cancer Center in Houston. Shortly after, Stewart relapsed and Tara donated lymphocytes to help save Stewart’s life.
After receiving Tara’s lymphocytes, Stewart began on his road to recovery and the two began exchanging monthly letters. Tara discovered that while he received his transplant in Houston, Stewart and his family were from Kona, Hawaii.
On the one year transplant anniversary, Tara said she and Stewart found a special way to mark the occasion. “We spoke exactly one year after I donated when I received a box of macadamia nuts from Hawaii,” she said. “I told him I was pregnant with our first baby.”
As the connection between the two families grew, Tara said the momentum of daily life kept them from meeting for many years. “He invited us to Hawaii yearly but, I was a busy resident with a new baby, then opened my own dermatology practice and had another baby,” Tara said.
Tara and Stewart continued writing and talking on the phone until 2011 when a family tragedy caused Tara to fully see the importance of their connection. “My own father was diagnosed with cancer and had an autologous bone marrow transplant that was unsuccessful,” she said. “He died in 2011, three weeks after I gave birth to my third child. I have never been so sad in all my life as when I lost my dad.”
While Tara turned to her family to help her grieve the loss of her father, she said her thoughts always returned to her connection with Stewart. “My new baby and my kids were my reason to go on but, meeting Stewart was literally the only thing I could think of that might make me feel better,” she said. “I did not want to regret not ever meeting him.”
Tara finally got her wish on June 11, 2013 when she and her family were met with smiles, warm embraces and of course floral leis from Stewart and his family at the Kona International Airport in Hawaii.
The experience left a profound effect on Tara and her family. “I feel like I won the lottery. Most people who are on the list don’t get the opportunity to get the call and save someone’s life,” she said. “I can’t think of a greater miracle than this.”
In May 2013, Cherise stepped into Be The Match on her first day and knew that her life had come full circle. “When I was hired I thought, ‘What are the odds?’” she said. “This was meant to be.”
Born with severe combined immunodeficiency (SCID), Cherise’s life was saved by a bone marrow transplant she received as an infant. Now, as an adult, Cherise uses her experience as a life calling to motivate and inspire people personally and professionally.
As the youngest of four children, Cherise said her mother quickly realized something was wrong with her newborn. “I was always sick,” she said. “I was three months old and the doctors were baffled.”
After months of testing at Minneapolis Children’s Hospital, Cherise was diagnosed with SCID in December 1977 and sent to the University of Minnesota Medical Center.
“Doctors told my parents it had never been done before, but they could try a bone marrow transplant,” she said. Her nine year old brother, Richmond, was a match, and Cherise received her transplant in February 1978.
Despite her family’s hopes, Richmond’s bone marrow failed to engraft into his sister’s. By the end of February, doctors told Cherise’s parents that her body rejected the transplant – her only chance of survival. “They told my parents to begin making funeral arrangements,” she said. “My parents went home to plan my funeral and tell my siblings their baby sister was not coming home.”
As her family prepared to say goodbye, a miracle moment changed everything. “My parents got a call a few weeks later telling them to get to the hospital immediately,” she said. “When they walked in, my eyes were open and I was smiling.”
Cherise remained at the University of Minnesota Medical Center while her transplant successfully engrafted. As the youngest of eight children who had received bone marrow transplants at the hospital in 1978, Cherise said the staff “adopted” her during her stay, including teaching her to walk and potty-training her.
Three months after her transplant, Cherise returned home with no immunosuppressant medications and lived a healthy childhood. Her mother sent the hospital staff periodic updates – Cherise even appeared on the cover of the University of Minnesota’s Health Sciences publication in 1983.
With no complications, Cherise’s healthy life continued into young adulthood. In 1998, while a junior at the University of Minnesota-Twin Cities, an unexpected phone call brought her back to her early fight for life.
“One of my nurses from 1978 called me,” Cherise said. “She thought I had died. She was in tears – it was very overwhelming.”
During the call, Cherise also learned she was the sole survivor of the eight children who had received bone marrow transplants in 1978. This realization gave Cherise a deepened sense of purpose – which was tested in 2001 when she was diagnosed with liver failure. “Over twenty years later, graft versus host disease came into play,” she said. “My immune system was rejecting my liver.”
After successful treatment, Cherise gained a renewed understanding about the importance of health and wellness. “I have been living healthy ever since,” she said.
With a career in Human Resources, Cherise said she thrives on teaching others about the importance of living well. “Hopefully, I can help educate diverse communities about the need for diverse donors,” she said. “I am a miracle. I truly believe there is a reason I am here. I believe I am doing what I need to be doing.”
Upon hearing the diagnosis, Traci immediately focused on helping Camden through treatment.
Today, Camden is a happy, healthy college junior who has made the dean’s list every semester. While she does require daily medication including growth hormone injections, her mother said the family feels “truly blessed” by Camden’s recovery.
Having watched her daughter beat a life-threatening disease, Traci desired to help other families dealing with serious illnesses. “With true gratitude and love in my heart, I knew that I needed to give back in some way,” she said. “I wanted to give the gift I received to someone else.”
When an elementary school in her community of Milford, Connecticut hosted a bone marrow drive for a six-year-old boy who had leukemia, Traci knew she had to attend. “Here it is – my chance,” she said, “how perfect.” At the time, Traci said she did not know much about Be The Match® but, felt driven to join the registry. “I knew this was it,” she said. “I was meant to do this.”
After what Traci described as a “quick swab of my cheek,” she said she left the drive feeling excited about her decision to help another person in need. Little did she know she would soon get a phone call that would change her life yet again.
“I got the call,” Traci said. “I’m a potential match! I was told it was my decision to move forward with donation.” I thought – are you kidding me? It would be my honor to donate.”
Traci was told by her donor center representative that she would give marrow in the form of peripheral blood stem cells (PBSC), one of two methods of donation. When starting the donation process, “Be The Match handled everything,” she said. “They made me appointments for things like my blood work and were with me for every step of the donation.” Traci said other than a one-time fainting spell during her first blood draw, everything went smoothly. My first thought after I fainted was that if Be The Match finds out, they won’t let me donate. I certainly couldn’t let that happen.”
At the appointment for her physical, Traci said the next blood draw went perfectly. “The staff and physician were wonderful – I passed with flying colors and without fainting,” she said. “Let the donation begin!”
Although she was “a little scared” prior to receiving her five Filgrastim injections, a drug given to stimulate a donor’s stem cells prior to donation, Traci said the process was “not as bad as I expected.” She was able to continue working while receiving the injections.
After the fifth day, Traci and her husband traveled to the Rhode Island Blood Center for her donation. “And so it began,” Traci said. “I had a wonderful crew of nurses coming in and out. My husband stayed right there with me.”
While the donation process was going smoothly, inclement weather nearly caused a problem for Traci. “About half way through my donation, the power went out,” she said. “The entire staff instantly was on their feet and in action. Thankfully, they had a generator and my donation continued.”
Despite the incident, Traci’s donation was successful.
One year after her donation, Traci was given the contact information for her recipient’s family. Traci then began communicating with her recipient Jeremy’s mother, Suzanne, through social media and email.
What began as an online relationship has bloomed into a lifelong friendship and connection between the two families who met in August 2013 and have plans to do the same this summer.
For Traci, being a marrow donor completes her mission to honor her daughter’s journey. “When I think about Jeremy, I am overwhelmed with gratitude,” she said. “Gratitude for being his match, gratitude that Jeremy, just like Camden, gets to live his life. Gratitude that I will be part of it and that I was able to give him part of me. I love him.”
She returned to college that May with a new passion for life. “My life had changed so drastically. I went from being 18-years-old to an adult in just a few short months,” says Becky. Feeling blessed, Becky changed her major from music to nursing, wanting to help patients like her.
In her final semester of college, Becky visited her doctor for her three year post-transplant check-up and received heartbreaking news. She had relapsed.
Adding to the heartache, Becky had recently joined a singles group at her church and had fallen in love with an amazing man named Clint. “We had been dating a little over a year when I found out I had relapsed and I didn’t know what this meant for our future.” A few days later, Clint proposed saying, “I don’t care if we have three weeks, three months or three years. All I know is I want to spend it with you.”
Her heart filled with hope, Becky gathered her strength and had her first DLI, donor lymphocyte infusion, a treatment option that eliminates the need for a second marrow transplant in some patients. A few months later, she graduated with a degree in nursing and was married the very next day.
But Becky struggled to stay healthy, relapsing and returning to remission six times. “I could never make it past the three year mark and this cycle became my new normal,” says Becky. “My family would joke about the ‘many faces of Becky’ yo-yoing from puffy steroid cheeks, to bald from chemo and appearing totally healthy.” But she remained a resilient fighter with support from her husband, family and her church.
But what really kept her going was her role as a Bone Marrow Transplant (BMT) nurse at Moffitt Cancer Center in Tampa. “The BMT unit is a place that needs hope and, just by looking at me, I give that hope to both my colleagues and patients—I’m someone who has walked in their shoes and truly understands,” says Becky.
In 2010, after her fifth relapse treated with DLI and drug therapies, Becky’s doctors decided it was time for a different approach. A search began for an unrelated marrow donor and three perfect matches were located. “I felt so lucky,” says Becky.
Becky chose to have her transplant at Moffitt and was admitted as a patient to her very own unit. “My colleagues are like my family and it was so great to know that everyone was looking out for me. I had so much trust in them.” Becky experienced some Graft-versus-host disease, a common side effect of an unrelated marrow transplant, but the transplant was a success.
Today, Becky is happy, healthy and has rejoined her team as a BMT coordinator. And, for the first time ever, she sailed past her dreaded three year post-transplant check-up with a clean bill of health. “All we’ve ever known is sickness, health, sickness, health so Clint and I were too afraid to make long-term plans.” She believes her future is bright. At the top of her bucket list is taking a trip to hug the young military man who stepped forward as her marrow donor and saved her life.
“Life is fantastic and I have been so blessed to share my journey with others,” Becky exuberantly says!
Fear of relapse is common—both before and after transplant
Ted was diagnosed with acute lymphocytic leukemia, Philadelphia chromosome positive, in May 2005. “When I was awaiting my transplant, and getting a marrow biopsy every 28 days to see if I had relapsed, my fear of relapse grew with each passing month, peaking in the month prior to transplant,” recalls Ted. “But even after I got my transplant, I knew I wasn’t out of the woods. I had to find a way to ease my fears so I could focus on getting better.”
To better understand your fear, look first at what triggers it. “It’s common for specific events like biopsies to set off fears,” says Jill.
Common triggers for fear of recurrence include:
- Biopsies, scans, and other tests
- Feeling new aches or pains
- BMT clinic visits
- Anniversary of a diagnosis
- Hearing about someone else’s cancer diagnosis or relapse
- Stories about cancer in the media
- Sights, sounds, and smells with negative associations
Find a coping strategy that works for you
A coping strategy can help you manage your fear. Some examples include relaxation exercises, deep breathing, listening to soothing music, or bringing a friend to distract you while waiting for an appointment. Jill says keeping your body and mind healthy (by exercising regularly and eating nutritious foods) or finding a group of peers to talk with can also help you relax and cope with fears.
Ted uses a variety of ways to cope with his fears. “Personally, I found prayer especially helpful,but I know that’s not for everyone,” said Ted. Just talking can help a lot. While I was in the hospital, I had access to a chaplain and a psychologist, and my wife Cindy and I talked openly about everything, including our fears.” And when Ted’s doctors would ask how he was doing, he would talk about both his physical health and his emotional state. “If you need help coping, I would encourage you to bring it up rather than wait to be asked.”
“Your care team can suggest resources and programs, including counselors, peer support groups, online tools, and relaxation techniques,” says Jill. “Medications might also be prescribed to help you feel less afraid and tense.”
Ted also created a CaringBridge website, which he describes as an absolute lifeline. “It’s hard to stay fearful when friends and family fill you with hope every day. And it can be especially reassuring to connect with other transplant patients who understand what you’re going through.”
How to recognize the signs when fear gets in the way of healing
Recovery after transplant is an emotional as well as physical process. “Fear and worry can interfere with healing” says Jill. “Talk to your care team if you notice changes in your sleep or appetite, if you’re having trouble concentrating, or if thoughts and fears are interfering with daily life.”
Learn more about understanding and managing emotions after transplant.
On bad days, Ted has another way of coping: “I’d remind myself that as long as my doctor wasn’t telling me to get my affairs in order, I was still here, I was still in the game, he says “Then I’d tell myself that I was done with leukemia, and pour my energy into healing.”
Celebrating progress, looking forward
After transplant, Ted’s fear of recurrence changed. “The first biopsy was especially nerve-wracking, but after that, I got the most reassurance from the data, from the statistics. I realized my chances of relapsing were decreasing rather than increasing. When my doctor told me I was doing well, I believed him. I’d look back on my pre-transplant worries and focus on how far I’d come.”
Many patients who feel uncertain about their future have a hard time setting long-range goals. “I encourage them to start setting short-term goals for themselves and work their way up to more long-range goals,” said Jill. “Looking forward, anticipating an enjoyable activity, milestone or events are great ways to stay focused on the future.”
Patients support each other
Now that he’s nine years post- transplant, Ted shares his experiences and insights with other transplant patients through a peer- support program. “Being part of the Be The Match Peer Connect Program has been equally beneficial for me as for the people I talk to. It can be easy sometimes to lose sight of how far you’ve come in your recovery. But focusing on the advances is a great motivator to keep going, to make the most of each day and all the days ahead.” The Peer Connect Program can be beneficial to anyone interested in either offering support or receiving support from others.
Share your coping strategies
What has worked for you? What would you recommend to other transplant patients and their families? Share your tips, advice, and favorite resources.