So, Rocky and Allison have found the perfect place to meet: Richmond’s June 1st Be The Match® Walk+Run at Monroe Park. They don’t have any idea what each other looks or sounds like, but they know that Be The Match — a non-profit that connects marrow donors with blood cancer patients — helped them find each other once before.
Allison’s marrow runs through Rocky. She’s the reason this 57-year-old husband and father beat cancer and is alive to enjoy his family, work and golf game. “The Be The Match Walk+Run sounded like a nice way to meet, make more people aware of marrow donation and help the cause that has changed both our lives,” said Allison, 27.
The 5K, 1K and Tot Trot fundraising event highlights the need for more marrow donors. Every year, more than 12,000 patients in the U.S. are diagnosed with blood cancers like leukemia and a marrow transplant from an unrelated donor is their best hope of a cure.
In 2007, Rocky was diagnosed with a blood cancer called myelodysplastic syndrome (MDS). He needed a marrow transplant to survive, but no one in his family was a marrow match.
Rocky was all too familiar with his situation. In 1993, his older brother developed leukemia and needed a marrow transplant. Rocky donated his marrow, but sadly his brother died from post-transplant complications.
While maintaining a positive attitude, Rocky couldn’t ignore his brother’s experience and updated his medical directives and will. He knew no one in his family was going to match him. Most patients (about 70 percent) do not have a marrow donor in their family. They depend on Be The Match Registry® to find an unrelated donor.
A year earlier, Allison, then a college student, had joined the marrow registry after her cousin was diagnosed with leukemia. “I wanted to be the match for my cousin, but I wasn’t. Another donor — a stranger — saved her life.”
“When I got the call about a man, about my dad’s age, who I matched — the decision was easy. I wanted to pay it forward,” said Allison.
“It’s one thing for me to donate to my brother,” said Rocky, who received his transplant at Virginia Commonwealth University Massey Cancer Center. “But Allison didn’t know me. She went through this for a total stranger. She’s my savior. It takes a very unselfish person to do what she did.”
The Be The Match Walk+Run 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, giving more patients hope for a cure.
Join a community transplanting hope. Help patients with blood cancers take the next step toward a life-saving marrow transplant by taking a few of your own. To register, fundraise, volunteer or support a runner or walker with a contribution, visit BeTheMatchWalkRun.org/Richmond.
To join or contribute to the Allison/Rocky Team and support all patients in need of a marrow transplant, visit: http://www.BeTheMatchFoundation.org/goto/AllisonRocky
What some parents are discovering is that giving birth can also change someone else’s life.
Tam’ra and Reinhard
When Tam’ra and Reinhard were expecting their first child, they saw a lot of advertising about storing cord blood, but weren’t interested in that option. They learned about the option to donate their baby’s cord blood during pre-natal classes at their Atlanta hospital.
“We did our research,” says Reinhard. “We found out that cord blood is rich with cells that can help people fighting certain illnesses.” After that, Tam’ra added, “It was kind of a no-brainer.”
Patrice and Kindu
Toward the end of their second pregnancy, Patrice and Kindu had determined they would not keep their baby’s cord blood for their own family’s use, “but we hadn’t learned much about public donation,” Patrice says.
When it was time to deliver the baby, a hospital staff member asked if they were going to donate the cord blood. “She asked a few basic questions and provided some literature. We talked it over and decided it wouldn’t make sense not to participate,” Kindu explained.
Listen to these parents tell their stories about public cord blood donation.
“My daughter held a car wash to fundraise, and I wanted to do something to help too,” said Craig. “I called my local blood center and decided to join the registry.”
The Call to Donate
Like many others, Craig joined the registry thinking he would never get the call to donate, or at least not right away. Little did he know that just four months later he would get the call. “I got a phone call saying that they wanted for me to come down for additional testing,” said Craig. After the additional testing and physical exam, Craig received another call from the blood center, this time asking if he would still be interested in going through with the marrow donation, pending a final round of tests.
While waiting to see the doctor to receive the results of his testing, Craig noticed a little girl around 10-years-old who had cancer. “At that point, it got real,” said Craig. The doctor explained that out of eight HLA markers, six were an exact match with a 62-year-old woman with non-Hodgkin lymphoma (NHL). Craig decided to move forward and the donation was scheduled for September 2005.
Not Even a Hurricane Could Stop Craig’s Donation
Two days before Craig’s scheduled donation, news sources in Texas and nationwide put out an alert that a category five hurricane named Rita was headed for the gulf coast and was expected to hit Pasadena, where Craig lived and was supposed to donate. As a firefighter, Craig would be responsible to help in a natural disaster like Hurricane Rita. When Craig explained his situation to the blood center, he discovered that the patient was very sick and could die if the donation was postponed. This meant that Craig needed to donate bone marrow (extracted from the hip) in the middle of a hurricane. The hospitals evacuated everyone who did not need necessary surgery in preparation for the hurricane, and Craig was admitted for donation.
After his donation, Craig was picked up in a fire engine by his fellow firemen. Because everyone was trying to get out of town before the storm, traffic was gridlocked. He was told to lean forward in the fire engine as they put the lights and sirens on to get Craig home. Once Craig was home safe, the hurricane made a right turn and missed Pasadena – dumping rain and 30 mile per hour wind gusts on the city.
Meeting this “Fiery Little Lady”
A year after his donation, Craig received a call from the blood center, asking if he wanted to meet his recipient. “My first response was no.” said Craig. “I didn’t donate to be a hero. I donated because it felt like the right thing to do.” When the blood center reached out to Craig a second time, they told him that they wanted to share their meeting with others to encourage new potential donors to join the registry, he agreed.
In October 2006, Craig met his recipient, Kathleen. “I told the reporters the whole story, I didn’t pay attention to the camera,” said Craig. “Then this fiery little lady ran at me, threw her arms around me and I thought she was going to run me over.” Craig and Kathleen stayed in contact off and on after their meeting. Then one day a couple of years later, Craig received a phone call from Kathleen’s husband, letting him know that she had passed away. Her husband and daughter both told Craig that without him, their family wouldn’t have had Kathleen as long and they were so grateful.
In Honor of Kathleen
In 2012, Craig decided to participate in a Be The One Run (now Be The Match Walk+Run) event. He was asked to fill out a race bib stating he was running in honor of Kathleen. It was then that it all came together for Craig. He finally realized the difference he had made.
“After 28 years of saving people from all types of terrible things, I thought this was nothing more than an extension of who I am and what I do,” said Craig. “She was special, she was something. I am fortunate that I had the opportunity to do something.”
Honor, celebrate and memorialize your loved ones and recipients like Kathleen. Participate in a Walk+Run event near you or give funds to help add more potential donors to the registry, advance transplant research and improve access to treatment.
I had always been a regular blood donor. Blood and needles—the medical stuff never bothered me, and it was something easy for me to do to help others. During one of my many blood donations, one of the people who worked there casually asked me if I would consider becoming a potential bone marrow donor, by joining the Be The Match Registry®. I asked what was involved, and they told me, “just one extra tube of blood” (Editor’s Note: Be The Match® has since changed its donor registration process to be a cheek swab, rather than a blood sample).
Seventeen years after joining, I was a potential match
Now fast forward 17 years—after numerous moves and a name change through marriage, Be The Match tracked me down. I was on vacation and when I returned I found a letter in the pile of mail at the post office—there it was, an envelope with a neon sticker indicating a high level of importance. I opened the letter to find out that I was a potential match for patient in need of a marrow transplant. The letter asked me to please respond – the patient in need was a four-year-old boy.
Thrilled by the miracle that I was a match
When I found out that I was indeed a match, one of the physicians involved in the program explained to me how the testing worked and the results. The doctor told me that I was a match for this little boy. To me this was nothing short of a miracle because, 1) we were not related, and 2) my ancestry is a real “Heinz 57″ with a few known, but also some “secret” ingredients.
My family, friends, employer, and community were all extremely supportive.
I thought the whole donation process went very smoothly. It was organized very well, from the itinerary to taxi vouchers and more—everything was there, easy to use and understand. I talked to many very kind people and I felt very supported.
Bone marrow donation
To me, the donation was easy. I got up early, went through all the pre op preparations and met everyone involved with the surgery. After the donation I was even able to see my bone marrow in the bag and I “blessed it” before it was whisked away to wherever the recipient was located. The post op recovery nurses then turned to me and said, “wow you just saved a life”.
The hospital staff helped me understand the recovery process and how to control the pain. In recovery, I took a nice long nap, and later that afternoon my dad came to pick me up and take me home with him. When we arrived there about 2 hours later, I had very little pain but was exhausted and went to bed early after eating dinner.
The surgical site felt like a bad bruise, perhaps like if you had fallen on your butt on the ice, or something like that. It really wasn’t that bad. The pain pills they gave me handled that pain just fine, in fact I don’t think I even finished the prescription and was able to take ibuprofen a week later, as needed.
Follow up on my recipient
While I never did find out the name or location of my recipient, three years after my donation I was told the little boy was okay. I recently inquired again and as far as the donor center knows, now some 8 years later, he is still alive. (Editor’s Note: A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent.)
If I was asked to donate again, I would do it in a heartbeat. It was well worth this experience to give a family hope for their little boy, when this was his last hope.
“To Me, It Was a ‘No Brainer’,” College Football Player Stays True to His Commitment to Be The Match
Ready to Donate from the Start
From the beginning, Matt was passionate about the cause. “Watching the videos about Be The Match® really opened my eyes. After joining the registry I began to give blood on a regular basis,” said Matt. Two years later, in the spring of 2011, Matt received the call he never thought would come. “I was told that I was a potential match along with three other people for someone in need of a transplant.” Matt went on to complete further testing to see if he was the best match for that patient. When Matt was told that he was the best match for a 42-year-old man with a form of lymphoma, he was shocked but excited to move forward with donation. “I was so excited; I wanted to donate right away. I said ‘let’s go’ but I was told it would take some time,” said Matt.
The Competitive Spirit between Brothers
Matt was told that the donation method requested by the patient’s doctor was a peripheral blood stem cell (PBSC) donation. He was prepared for the possible side effects, but did not experience any reactions until halfway through the third day. “I had a massive headache and felt achy,” said Matt. “I told my coach and ended up sitting out of two football practices.” Even with the headache, Matt described the days leading up to donation as “not too bad.” As for the donation? Matt took his competitive spirit with him for the collection. “Within four hours, the apheresis center had extracted enough for two donations because my count was so high,” said Matt. “It was the highest count they had ever seen, until my brother.” This past fall, Matt’s younger brother John also donated PBSC to a patient in need. Nineteen-year-old John, who is also an offensive lineman on the University of Rhode Island football team, registered in the spring of 2012. “My parents thought John always wanted to follow in my footsteps,” said Matt. “Now he really is!”
Matt and John both received an outpouring of support from their friends, family and teammates, especially from people touched by cancer. “They thanked me for what I did. It was a reaction I wasn’t prepared for,” said Matt. “They were all so proud, but to me it was a no brainer.”
Meeting Matt’s Recipient and Their Football Connection
A year after Matt donated PBSC, the Orlando Cancer Treatment Center flew him down to Florida to meet Ken, his recipient. Ken, coincidentally a huge college football fan himself, is in full remission. After his graduation this past December, Matt traveled to Florida a second time to attend a college bowl game with Ken.
Matt plans to continue his education with a master’s degree in exercise science or strength and conditioning—while staying involved with Be The Match putting on registration drives. In the past three years of the football team’s annual drive program, the school has produced four donors—Matt, his brother John, his assistant coach and another college athlete.
“Thousands of people are looking for a match,” said Lexy. “I joined the registry and when I received the call from Be The Match saying I was a match, it was the most amazing feeling. Now I tell other students that they, too, could be the cure.”
After Gary found out he was not a match for Aggie, he was determined to help in other ways. From 2011 until now, Gary has walked in every single Be The One Run® event, now Be The Match® Walk+Run—snow, rain or shine—remotely from his home in Montana. “I have an internal drive to walk for people who have nothing left except hope,” said Gary. “I began walking for people like Aggie, who lost her battle. She was a remarkable and very brave person.”
Gary plans to continue walking for the Be The Match® mission, raising funds and providing hope for those in need of a marrow transplant. “I will always be a donator for causes that truly help other people,” said Gary. “It isn’t about the money or about the bone marrow that I am willing to give, it is about the hope and encouragement I could provide for others.”
Decked out in downtown Minneapolis…
On Wednesday, Sept. 5, 650 attendees filled the Minneapolis Hilton to pay tribute to 25 years and 50,000 transplants. The event raised more than $310,000 for Be The Match, an increase of more than $50,000 over last year. Before the program began, attendees had a fun time bidding on 265 silent auction items.
Ann Goldenberg Altman , tribute committee chair and a survivor welcomed everyone. Ann was diagnosed with Hodgkin’s lymphoma at 23 and was successfully treated with chemo.
“Fear of relapse is always there, even with all the gratitude and luck,” says Ann. “For me, if that happens, I know my path. The possibility of needing a transplant was always my worse-case scenario. If there’s a way to pay it forward, I want to do that. I didn’t want to wait to be involved with Be The Match until I need it. I want this organization to be well funded and cutting edge, and I want there to be all the registry members it takes to find matches.”
The formal dinner included the excitement of a live auction. Items auctioned off included two VIP tickets to a Madonna concert, a five-course dinner for eight people at Murray’s, a trip to Charlotte for a NASCAR race and Twins vs. Yankees tickets.
Dr. Jeffrey Chell, CEO of the National Marrow Donor Program® and Christine Fleming, president of Be The Match Foundation spoke during the program, and Dr. Dennis Confer, chief medical officer for the National Marrow Donor Program hosted a moving donor/recipient meeting between recipient, Zalika, and her donor, Tinisha. Zalika suffered through the pain of sickle cell anemia for years, was frequently in and out of the hospital, and missed out on a normal high school experience. She gratefully received her transplant from Tinisha in 2010.
A total of 265 attendees gathered at Fernbank Museum of Natural History for a second Tribute on Saturday, Sept. 22. Many attendees seemed to know each other and greeted each other warmly. The auctioneer had them whooping and hollering during the live auction, with lots of cheering after each bid. Revenue from the event totaled over $108,000. There were 130 silent auction items and three live auction items (round-trip airfare for two; one week stay in Costa Rica and a seven-day stay at Alabama’s Lake Wedowee).
The donor/recipient meeting in Atlanta introduced Asa to her donor Edward. Asa is an elementary school teacher in Marietta, GA, who underwent a marrow transplant in 2010 for acute lymphoblastic leukemia (ALL).
During the program, Meg, a transplant recipient who attended the 2011 Council Meeting was the keynote speaker. “The room was completely riveted by Meg’s speech,” said Tiffany Friesen, regional director of Be The Match Foundation. “You could hear a pin drop.”
The two galas were celebrations of what Be The Match has accomplished—25 years and 50,000 transplants—and of the exciting growth and life-saving advances that are strived for each new day.
Diagnosed at birth
At birth Finn was diagnosed with Wiskott-Aldrich syndrome (WAS), a fatal hereditary immune system disorder that claimed the life of Finn’s uncle Mark in 1975 at the age of nine. In fact in the mid 70s, most children with WAS did not survive much longer than a year, as today’s life-saving bone marrow transplant treatment was not widely available and the National Marrow Donor Program® (NMDP) had not yet been established.
Thanks to advances in bone marrow transplant techniques and the creation of the NMDP, a cure was now available for Finn. The problem was not only that Finn needed a bone marrow match but that he also had to be old enough to survive the radiation and chemotherapy needed to prepare his body for the new bone marrow. Finn spent most of the first two years of his life in and out of the hospital, staying for months at a time, while doctors scrambled to get his body stable enough to undergo a bone marrow transplant, his only chance for a cure.
A matching donor
To find a match, siblings and close relatives are tested first, but 70% of patients searching for a donor do not find one within their own family. Finn is half Asian and half Caucasian, so finding a match could have been a challenge, since only 7% of the potential marrow donors on Be The Match Registry® are of Asian descent. The odds did not seem in his favor, but a search of Be The Match Registry began to find an unrelated donor for Finn.
Despite the odds, a perfect 10 out of 10 match was found.
The person who helped save Finn’s life is Melissa. She had joined Be The Match Registry about eight years prior during a blood and bone marrow drive underwritten by Coca-Cola, her employer at the time. Ironically, by the time she was contacted by Be The Match, her mother was undergoing her own cancer treatment. Melissa felt there was not much she could do for her mom medically, but she could do something for someone else.
Melissa was still nervous, and like many potential marrow donors, she worried that her bone marrow might not work. After completing a series of medical tests, she found the actual procedure very easy. Melissa’s life-saving cells were collected through a peripheral blood stem cell (PBSC) donation, similar to donating platelets. PBSC donation, the more common of the two methods of donation, requires no anesthesia or surgery. Melissa reported the worst part was sitting still for several hours.
Be The Match maintains strict confidentiality standards to protect the privacy of donors and patients. Melissa only knew that the person she was helping was a young boy with Wiskott-Aldrich syndrome. The family was only told their son’s donor was a young female. A year after transplant both parties had the opportunity to sign consent forms releasing their contact information to each other, and both Melissa and Finn’s family were thrilled to begin communicating with each other.
Meeting for the first time
When Melissa found out the transplant was a success, she said it was hard to describe how joyous she felt. She could not get over the fact that something so small could save someone’s life, and she was happy to be able to share with her mom that she had saved this boy’s life. Her mom has since passed away from cancer.
Finn and Melissa met for the first time at the 2011 Be The Match Foundation Tribute to Patients in Atlanta. Since then, Melissa and Finn’s family have stayed in touch. “It’s truly awesome – I have really enjoyed watching Finn & Olyvia grow up the past 5 years,” said Melissa.
What would Melissa say to someone who is thinking about registering: What are you waiting for? It is the easiest gift you can give.
– Kahlil Gibran
Date: February 2012
My donation story began at a health fair presented by my then employer, El Paso Corporation, in Houston in mid-2007. At that event, in amongst the numerous health-related exhibitors touting state-of-the-art toothbrushes and testing folks for hypertension and glaucoma, was a booth for the donor registry now known as “Be The Match – National Marrow Donor Program”. I was drawn to it by a friendly male volunteer who guided me through a simple questionnaire and an easy process of swabbing the inside of my cheek with six Q-Tips. The man explained to me that from those six swabs my cells would be collected and the information (antigens) from them would be stored in a database for possible matching to potential recipients – recipients with diseases of the blood ranging from sickle cell to leukemia. I distinctly remember thinking to myself at that moment “wouldn’t it be fantastic if I were to match somebody someday.” It must have been premonition. I threw it out into the universe. If I were to ever be called upon to donate because I matched someone in need, I would do so willingly and wholeheartedly. In hindsight, I know I committed to it at that moment.
The Call That Changed My Life
Fast forward four years later to 2011 – I received a phone call that quite literally changed my life. Given that I am a middle-aged, twice-divorced woman with no children, I had begun wondering how I could leave some kind of legacy. How would I make a difference? What has my life meant? Mind you, I have established a career that has surpassed anything I could have ever imagined, and I am blessed to be in a relationship with Frank, the man of my dreams whose love for me is strong and unconditional. My parents and brothers and their families are healthy, happy and beyond wonderful – one and all. Still… in my mind I was beginning to wonder, how can I make an impact?
It is no secret to anyone who knows me that I have always been a bit skittish about doctors and hospitals. So when the call came in that day, I remember looking at the caller ID on my office phone and reading the words “Blood Center”. My heart started pumping. What could it be? The woman on the other end of the line with the young-sounding, upbeat voice and positive, pumped-up attitude informed me that I had come up as a potential match in the bone marrow registry. Talk about some heart pounding… mine really was then… how exciting! My donor counselor explained that my six blood antigens had turned up as match for a young woman (18 years old) who was living with a rare but potentially fatal disease . That was all the information she was authorized to give me about the patient / potential recipient – gender, age and disease. She had but one important question for me during that call – “Gayle, knowing what you know now, are you willing to move into the second phase of testing as a potential donor for this patient?” For me, in that moment, it was as if I had won a lottery. Most registry members never get the chance, and here was mine! My answer to her was an emphatic, enthusiastic YES! She explained that should I test out and be a match for this young woman, I would likely be called upon to donate peripheral blood stem cells (PBSC) rather than bone marrow. That however would be for the patient’s doctor to determine.
Testing to See if I’m a Match
In the second phase of donor testing I was required to answer an in-depth, confidential, online health questionnaire and then be present a few days later at the blood center for the drawing of more blood samples. These blood samples would be tested on an additional four blood antigen markers. In all, ten blood antigens were checked to see how close of a match I was to the recipient. I learned that the wait for those test results could be up to six weeks for me to know whether or not I would move on to the third phase of donor testing.
Needless to say when, about ten days later, the caller ID on my office phone showed that the blood center was calling again, I was more than a little surprised. My initial thought was, “Oh darn… I’ve been ruled out.” But no… on the other end of the line was the donor program nurse, calling to tell me that I had indeed passed the second phase of testing. I was overwhelmed with a wave of emotion and just erupted into tears. The nurse, having never spoken to me before, was unsure how to interpret my reaction, so when I told her I was joyous and ecstatic she said she wished she had recorded the call. She said that after having passed through the second phase of testing, it is official that I am a donor candidate and I match this recipient.
Testing to See if I’m the BEST Match
The third phase of donor testing was all about me. Was I mentally and physically able to be a donor? My donor program nurse explained that the recipient’s doctor had indicated that he wanted me to undergo a “bone marrow donation” rather than the stem cell procedure (PBSC), because this would be the best choice for this recipient. The nurse emphasized that my decision to move forward from that point would be a commitment – one that may mean life or death for my recipient. Assuming I passed the upcoming physical exam and gained medical approval from the blood center’s medical staff, my recipient would be required to receive a couple of weeks of chemotherapy that would strip her of every bit of her own bone marrow. Without the replacement cells (my bone marrow gift), she would die. WOW… that was powerful! In stark contrast to what the recipient was imminently facing, moving forward for me meant a simple outpatient surgery, general anesthesia and a recovery period. No question about it… I was all in.
Did I mention that doctors and hospitals make me a bit skittish? It is worth noting that, except for a bout of dehydration and pneumonia at age 18 months, I had never been treated in a hospital as a patient nor had I ever been administered general anesthesia. I know that my anxieties had always been more about fear of the unknown but that did not make them any less real. Yet, in my decision to donate, I felt assured and surprisingly calm. I simply kept reminding myself that if my recipient, a gravely ill but incredibly strong young woman who has endured more in her short life than I have or probably ever will, is ready to risk her life, then the least I can do is oblige myself to some minor discomfort and a little time out of my life to try and help save hers.
My Gift – Marrow Donation
The recipient’s doctor requested a bone marrow donation at the start of the holiday season. In the season of thanksgiving and gift giving, what a gift I had been given! The opportunity to share some of myself in order to try and save someone’s life… it is an incredibly powerful feeling. Frank and all of my family, friends and co-workers had questions but were supportive of my decision, and I was excited and in awe of what was transpiring in my life.
The bone marrow donation and the recovery experience were easy, unremarkable and went off without a hitch. Frank was there with me that day and throughout, as was my Mom who came from Oklahoma City for the procedure and to spend a few days with me in recovery. My donor program nurse visited me in the hospital before my procedure and presented me with a little book entitled “Hero”. I was speechless and overwhelmed. I was treated with great care and the utmost respect by my doctor and his nurse– two knowledgeable and wonderful health-care providers. It was a piece of cake.
30-Day Update on My Recipient Sister
In 2012, again sitting at my desk, the phone rang and the caller ID read “Blood Center”. It was my donor program nurse. She was calling to give me a 30-day update on my recipient, and the news was good. My recipient was progressing and tests revealed that she had “engrafted” my cells and was producing my bone marrow. What a miracle! She went on to say that I will not receive another update until the six-month anniversary of my procedure. And, if all goes well, at the one-year mark, I may have an opportunity to meet my recipient face to face.
I pray for that young woman everyday, my recipient sister, and even if I never get to meet her, I am honored and privileged to have had the opportunity to give her a second chance at life.
As for my question about making an impact and leaving a legacy? Well, that’s been answered now.
Editor’s Note: Gayle was recently notified that her recipient had passed away. Gayle was deeply saddened by this news, but continues to be a passionate advocate for the donation process and Be The Match.