A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
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37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, former head football coach of the Villanova Wildcats. Talley retired from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer continues long after he walked off the field for the last time.

Answering the Call

In 1992, Talley was listening to the radio when he heard a fact that would change his life: Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. For tens of thousands of these patients a bone marrow or umbilical cord blood transplant could be their cure – yet only half receive the potentially life-saving transplant they need.

“When I heard the devastating odds of those in need of a transplant, I immediately knew that I had to do something,” Talley said. “With 90 young healthy football players on my team and the power of collegiate football behind me, I knew I could recruit donors and hopefully make an impact.”

Coach Talley at presenting Be The Match with a $125,000 check

Coach Talley presenting Be The Match with a $125,000 check

Recognizing that his young and healthy football players had the potential to become marrow donors, and use their clout on campus to recruit others to join, Talley set out to educate his players and the community about the opportunity to save the life of a stranger by joining the Be The Match Registry®.

A Team of Ideal Donors

Talley had an important audience on his team. 18-24 year old males are the ideal bone marrow donors. In general, the younger a person is, the healthier their marrow and because men tend to have more body mass than women, they have more marrow to give.

Additionally, since patients in need of a transplant are more likely to match someone who shares their ethnic ancestry, the diversity of his team played an important role, too. Currently, African American patients have the lowest odds of finding a match compared to all other populations and make up only 6 percent of the registry, a fact that stunned Talley.

Beyond recruiting his players to join the registry, Talley began hosting donor registry drives on the Villanova campus and raising funds to cover the costs of tissue typing. At every drive, Talley emphasized how easy it is to join the registry and potentially save a life—all it takes is a swab of cheek cells; no blood is drawn. In 2008, Be The Match® approached Talley with the idea of working together to expand his on-campus drive efforts and the “Get in the Game. Save a Life” (GITG) initiative was born.

Spreading the Word

Since then, more than 75 other college football programs have enlisted to participate in GITG, which has led to nearly 71,000 new registry members, more than 300 of whom have matched with and donated to a patient in need.  One of these donors is Chicago Cub and former Villanova football and baseball star, Matt Szczur, whose donation story was recently featured by ESPN.

“Coach Talley gave me the opportunity to save someone’s life,” Szczur said. “What’s more motivating than that?”

In addition to his involvement with the GITG initiative, Talley also runs The Andy Talley Bone Marrow Foundation which has donated more than $375,000 to assist with covering the costs of adding new members to the registry.

The Commitment Continues

It’s important to Coach Talley that his mission of getting more committed donors on the registry doesn’t retire when he does. His successor, Assistant Coach Mike Ferrante, sits on The Board of Directors of The Andy Talley Bone Marrow Foundation, and he will continue to share the message that anyone can save a life. And Talley plans to deepen his involvement supporting this worthy cause after his final season with the Wildcats.

“With a lot more time on my hands, I am looking forward to increasing awareness and recruiting a ton of coaches to join our Get in the Game initiative,” said Talley. “It is my dream to have every college football team nationwide host a drive and join our passion of saving lives.”

To join the registry visit Join.BeTheMatch.org/GetInTheGame2017

An Ocean Away

Posted December 3rd, 2014 by Be The Match and filed in News
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The life-changing call:

On September 9th Duke’s phone rang. Expecting one of his four children or his parents, he picked up the call. Instead, he heard the voice of a man he had never met – an oncologist. “I need you to come to the hospital tonight,” the doctor told Duke. He broke the news directly, “you have leukemia.”

Duke was at the hospital earlier that day being tested to determine the cause of his declining condition. He knew that something was wrong and was actually relieved to learn of the diagnosis and begin working out a treatment plan.

Shortly after arriving at the hospital that evening, Duke underwent additional testing. Within a day, his results were back. He was then faced with an even harder fact to comprehend, a fact that would shake his entire world: without immediate treatment, Duke only had a month to a month and a half to live.

That was six years ago, when Duke was 44. Thanks to a complete stranger, an ocean away, Duke is alive to share his story of faith, good fortune and, above all – survival.

The fight to survive:

 Shortly after Duke was diagnosed, he started chemotherapy. Amazingly, after a year of extremely aggressive treatment, Duke was pronounced cancer free; but he wasn’t in the clear just yet. His doctors told him they were certain the cancer would come back, and when it did, the disease would be stronger and more aggressive.

Unfortunately less than nine months later, the doctors’ prognosis was right. Duke’s cancer was back, and this time, he needed more than chemotherapy to survive. “My diagnosis was aggressive, so they knew they were going to have to do something to try and save me. The doctors told me, you aren’t going to survive without a marrow transplant,” said Duke.

The search for a match began by testing Duke’s siblings. When they tested negative, his doctors turned to the Be The Match Registry. That’s when Duke won what he would later call his “lottery ticket,” – a matched marrow donor. After intensive chemotherapy to prepare his body, Duke received the transplant that saved his life.

The meeting of a lifetime:

Immediately after his transplant, Duke knew he wanted to meet the young man that gave him his life back. “In my mind, I must have painted my donor a million different ways. I had thousands of questions for him,” said Duke.

In America, if both parties agree and the transplant center allows, a donor and recipient can meet one another, but must wait one year after transplant. Because Duke’s donor was from Germany, the waiting requirement was longer. After two years, Duke was finally able to reach out to the man who, at 27, saved his life by donating Peripheral Blood Stem Cells (one of two methods of marrow donation). Duke offered his donor the opportunity to fly to Colorado so they could meet.

In October, Duke’s donor, Marco, did just that.  Before he arrived, Duke had so many things he wanted to tell Marco, but most of all he wanted to say thank you. “There is a cascade effect when someone is diagnosed. It cascades to family to friends, to a huge amount of people, not just one. I wanted to make sure Marco knew that what he did affected a lot of people. I wanted my entire family to have the opportunity to give him a big hug and say thank you”

Marco and Duke spent the next 10 days together, getting to know each other and developing a deep bond. “It was definitely a connection we will maintain,” said Duke.

The blessings along the way:

When Duke looks back on his experience, he believes God had a plan for him and this faith is what helped him through the entire ordeal. “If everything was perfect, and bad things only happened to bad people, life wouldn’t be as brilliant as it is,” he said. “Bad things happen to good people too, there is no way around it, this allows us to realize just how fortunate we are.”

In addition to recognizing how fortunate he was, Duke learned something else about himself – he is stronger than he ever could have imagined. “You may think you know how you would respond to a life-changing event, but I would argue that you will never really know how strong you are until you are in the foxhole, fighting for your life,” he said.

Marco did what he promised, donated marrow to save a life. “At the end of the day, that’s what you want. You want everyone to have the chance like I did,” said Duke.

 

Aruni Donated PBSC Despite Concerns of Family and Friends

Posted December 5th, 2013 by Be The Match and filed in Donor Stories
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Aruni Story 3Many people join Be The Match Registry® in hopes of becoming a match for a family member, friend, or someone in their community. When a member of her community was diagnosed with leukemia in 2009, Aruni did just that. She joined the Be The Match Registry at a registration drive held on his behalf. In the end, Aruni was not a match and the patient that motivated her to join passed away. Through it all, Aruni stuck with her commitment to Be The Match and remained on the registry, hoping she could help someone else.

Members of Be The Match Registry join knowing that they may never be identified as a match for someone, or that they could be one of a number of potential matches. In some cases, members who join may be the only person on the registry who can save a particular patient’s life.

Three years after joining the registry, Aruni received news that she was a potential match. “I couldn’t believe that I was chosen as a possible match and that I was picked out of everyone on the registry,” said Aruni, “It was a really big surprise and I was really happy!” Thinking of her friend who passed away from leukemia, Aruni had no doubts about proceeding with additional testing. “I was a little nervous because I didn’t know if I was actually going to be the true match or not,” said Aruni.

Aruni was selected as the best match for her recipient and could not have been more thrilled. She immediately told her family and friends that she had matched, but their initial reactions to this exciting news were not as she expected. Aruni’s family was worried about her decision to donate because of the misleading information they received from others. They were hesitant about possible side effects Aruni would face, the time it would take away from her work, and her overall health. After hearing their concerns and knowing that she would need their support, Aruni was able to talk to her parents and make them feel more comfortable about her decision by educating them about the steps of donation.

Aruni donated peripheral blood stem cells (PSBC) to a 34-year-old woman fighting acute leukemia. After the donation, she was given an update about her recipient with the amazing news that the donation was successful. Recently, Aruni received an update that her recipient had returned to work and is doing well! Aruni is looking forward to finding out if she can be in contact with her recipient in the future. Until then, Aruni keeps her contact information up to date in hopes that she can be matched again and stays committed to Be The Match® by sharing her story with others.

Editor’s note:

Sharing your decision to donate marrow with family and friends is very important. If your loved ones have concerns or questions about the donation process please utilize the Donor Toolkit: Sharing your decision with family and friends. This toolkit is designed to help donors answer questions their spouse or partner, parents, children, and friends may have throughout their journey and create positive conversations about moving forward with donation. Be The Match wants you and your support network to be informed and comfortable with your decision to donate marrow.

“If I knew it was that easy, I would donate every week if I could” – Darrell’s Donation Story

Posted November 1st, 2013 by Be The Match and filed in Donor Stories
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Darrell donorFour years after joining the Be The Match Registry®, Darrell received a call from Be The Match® with the exciting news that he was a potential match for a patient.

Support from family and friends

Knowing little about the donation process, Darrell turned to his family and friends for support. They were thrilled to hear he was a potential match, but at the same time, were shocked that he and other marrow donors could be so giving to complete strangers.

After speaking with representatives from Be The Match and learning more about the two types of donation, bone marrow and peripheral blood stem cells (PBSC), Darrell’s supporters encouraged him to move forward with additional testing. Test results came back stating that Darrell was, indeed, a perfect match for his recipient, and he soon found out he would be donating to an elderly male with lymphoma.

The first donation – PBSC

Darrell’s first donation was in 2007, when he donated PBSC. Before his donation, Darrell had only seen medical procedures on TV, or had heard about them in his work as a pharmacist, so he was understandably a bit nervous. “It was intimidating to think that I was donating to someone and I had no idea who they were” said Darrell, “but I would hope that if I were ever in that situation that someone else would do that for me.”

For five days leading up to the PBSC donation, Darrell received injections of a drug called filgrastim. This is given prior to every PBSC donation in order to increase the number of blood-forming cells in the bloodstream. As a result of the filgrastim injections, he experienced moderate bone pain and headaches, but claims that it was nothing compared to what his recipient was going through.

After donation, Darrell explained that “it was less painful than I thought it would be” and his recovery went smoothly.

The second donation – Marrow

Five years after his first donation, Darrell was found to be a match again—this time, for a 16-year-old boy diagnosed with leukemia. For this donation, Darrell was asked to donate marrow, a surgical outpatient procedure where liquid marrow is extracted from the pelvic bone. Marrow donation was the first time Darrell had ever experienced anesthesia. “I was educated step-by-step what the procedure would be like and any questions or concerns I had were quickly answered” said Darrell. This allowed him to go into the donation with confidence. Once his donation was complete, Darrell experienced slight tenderness in his back for two days and was then able to return to his everyday routine.

Although Darrell has never met either of his recipients, he recently received an update that both are doing well. “It was a very surreal experience” said Darrell. “Although I could be walking down the street next to one of my recipients and not even know, I am glad I joined the registry. It was a very positive experience.”

Darrell’s Advice to Others

Looking back on both donation experiences, Darrell is overjoyed. He shares his story proudly and encourages others to learn more about joining Be The Match Registry. “The more people you can let know about this cause, the better” said Darrell. “If I knew it was going to be that easy, I would donate every week if I could!”

Donating not once, but twice to give a young boy life

Posted June 28th, 2013 by Be The Match and filed in Donor Stories, News
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Bhairavi’s Story

Bhairavi donorIn 2005, Bhairavi joined the Be The Match Registry® to see if she would be a match for her dear friend who had been diagnosed with leukemia. Like many others who join the registry, Bhairavi was hopeful that she would be a match for her friend. As time passed, she found out she had not matched her friend, whom she called her 11-year-old inspiration. But just three years later, Bhairavi was happy to receive a call from Be The Match®, informing her that she could be the one to help save the life of another young boy.

Getting the Call to Donate

The week Bhairavi received the call, she was finishing her Master’s thesis and preparing for finals. On the call, she was told that she was a potential match for a seven-year-old boy with acute myelogenous leukemia (AML). With mixed emotions and a fear of the unknown, Bhairavi talked with her friends and family about this life-changing opportunity. After these discussions, she decided to go forward with additional testing to see if she could be this young boy’s marrow match.

Much to Bhairavi’s surprise, the test results came back and the doctor told her that she was a “perfect” match for this patient. Hearing this information, she thought of the friend who inspired her to join the registry three years earlier, and accepted to donate in honor of him.

The Donation—Feeling the Connection

Just two weeks after her graduation, Bhairavi donated peripheral blood stem cells (PBSC), one of two methods of donation, to a stranger—a little boy in need. Although she received little information about her recipient before the donation, Bhairavi felt connected to him.

Prior to PBSC donation, donors receive injections of a drug called filgrastim. These injections increase the number of blood forming cells in the donor’s bloodstream, and are taken for five days leading up to donation. For Bhairavi, these shots were worse than the actual donation. But remembering that the pain was only temporary, Bhairavi was able to keep her head up and move forward with donation.

Meeting her Recipient

A year after the donation, Bhairavi was contacted by her recipient’s family asking if she would like to connect*. They chatted via email for more than a year, and later decided to meet in person in Chicago. Two years later, Be The Match contacted Bhairavi again, asking if she would consider donating to her recipient for a second time. Without hesitation, Bhairavi agreed.

The Second Donation

The second PBSC donation was very similar to the first. Bhairavi arrived at the hospital early to prep for the procedure. Today, she describes the second donation as, “not as extensive or as painful” as the first. “I would compare [my experience] to running a marathon,” said Bevi. “You don’t know if you can keep going, but in the end you are really proud of yourself – It’s really rewarding.”

Five Years Later – Life After Donation

Today Bhairavi is married and working as a Gerontologist (the study of the biological, psychological, and social aspects of aging). She lights up when telling others of her donation experience, and describes her journey in a very upbeat and positive manner. “The entire experience was life-changing,” said Bhairavi, “to know you have saved a life – it changes the way you look at things.”

By sharing so much with an individual she had never met before, Bhairavi said it brought her back down to earth. When asked if she would ever donate again in the future, Bhairavi responds whole-heartedly with, “absolutely!”

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.

Meet An Advocate: Betsy Lucas, Minneapolis, MN

Posted December 6th, 2012 by Be The Match and filed in Patient Stories
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Three months to live. Betsy Lucas received that devastating deadline when doctors diagnosed her with leukemia in 2005. But Betsy, a schoolteacher and mother of two, had hope: if her doctors could quickly find a matching bone marrow donor, a transplant would offer her a second chance at life.

Hope became reality with the help of a German teenager. Through Be The Match®, Tobias Hoffman, 19, was identified as a bone marrow match for Betsy. That’s because Be The Match® partners with other international registries to give patients access to approximately 19 million donors and nearly 600,000 umbilical cord blood units worldwide. 

Betsy received her transplant at the University of Minnesota in 2005, and has been cancer-free ever since.

Today, Betsy is healthy and leading an active life with her husband and their young daughters. Still, she hasn’t forgotten about the people who helped her. She had the opportunity to thank Hoffman in person and has reached out to Be The Match to help provide this life-saving gift to others. Betsy has logged hundreds of volunteer hours raising awareness about the importance of bone marrow donation, educating patients and recruiting donors to join the registry.

Dwight’s Donation Story

Posted July 2nd, 2012 by Be The Match and filed in Donor Stories
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Dwight donated peripheral blood stem cells (PBSC) in 2000Dwight’s donation story begins in 1991 while working in a hospital laboratory.  After drawing blood from potential donors who wanted to join the Be The Match Registry®, he was inspired to join himself.  Not long after, a cousin with Leukemia required a bone marrow transplant to live. While Dwight was not an HLA match, their family was able to find a match with an unrelated donor on the Be The Match Registry. Dwight, a medical technologist of more than 25 years, was grateful for this stranger’s gift and became hopeful that one day he also could save a life through marrow donation.

The call and family support

It wasn’t until the summer of 2000 that Dwight was called as a potential match for a patient. After completing further confirmatory blood tests, Dwight was told that he was the best possible match for a woman, and that he would be donating peripheral blood stem cells (PBSC)—one of the two methods of donation. “When I was chosen, I wanted to both yell and cry for joy for what I could do for this patient,” said Dwight. Family, friends, church, work—everyone was very supportive of Dwight’s decision to donate.  During his confirmatory blood testing, he tried to lighten the mood by singing, “stem cell man, stem cell man, I wanna be a stem cell man!”  Prior to Dwight’s donation, his colleagues even gave him a “Stem Cell Man” t-shirt to acknowledge the importance of his gift. Dwight was able to bring his family to the donation center to share in the experience and to support him through the donation.

The PBSC donation process

PBSC donation is a nonsurgical procedure (much like donating plasma or blood) that takes place in a blood center or outpatient hospital unit. On the four days leading up to Dwight’s donation and on his donation day, Dwight was given injections of a drug called filgrastim to stimulate stem cell growth. This is a part of all PBSC donations. “On the second day of injections,” said Dwight, “I could actually feel the stem cells multiplying!”

During the PBSC donation, Dwight’s blood was removed through a needle in one arm and passed through a machine that separated out the blood-forming cells. Dwight’s remaining blood was returned through his other arm. Typically, a donor’s blood-forming cells are back to their normal levels within 4 to 6 weeks.

Dwight’s message to registry members

“Don’t lose hope that you might donate some day,” said Dwight. “It may never come, it may come tomorrow—but it’s important to keep your contact information updated so you can be contacted if you’re a match.”


Editor’s note:
The patient who received Dwight’s stem cells passed away just under a year after her transplant. Dwight still sees his donation as a positive experience today because he was able to give the patient hope and time. He would donate again in a heartbeat.

Click here to read Dwight’s brother, Ray’s donation story.

Organ donation and Facebook’s Life Event

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Organ donation and Facebook’s Life Event – an opportunity for registry members

After taking a personal interest in organ donation, Facebook CEO Mark Zuckerberg announced that organ donors can now add their organ donation status as a Facebook Life Event. Did you know that you can easily add your Be The Match Registry commitment on Facebook too? Here’s how:

Save the image below to your computer.

Be The Match Facebook Badge

From your personal Facebook timeline page:

  1. Click Life Event in the status update window at the top of your timeline
  2. Select Health & Wellness
  3. Select Other Life Event
  4. Title the event Joined Be The Match Registry as a potential Marrow Donor
  5. Upload the Be The Match image from above (right click to save
  6. Insert the date you joined the registry – if you are unsure, please call us at 1-800-MARROW2
  7. Add the location and a line or two about your story (optional)
    • For donor/patient confidentiality reasons, please don’t post your donation date if you have donated marrow or PBSC.
  8. Select your audience (next to the Save button) and click Save

Note: As with some personal information on Facebook, this Life Event status can be kept private or shared publicly or only with friends. In order to share this Life Event, you need to upgrade to Facebook timeline. To get started go to the Introducing Timeline page and click Get It Now. Learn more about upgrading.

Craig Ruhoff’s donation opportunity came quickly

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Craig Ruhoff, who graduates this May from St. John’s University in Minnesota, joined the Be The Match Registry® last year at a local fundraising race, the Fool’s Five Road Race, in Lewiston, Minn. Only four months later, he was called as a match and donated to a 16-year-old boy. At this year’s Fool’s Five race, he encouraged others to join the registry by sharing his donation experience.

This is Craig’s story.

It started with a race
I’ve participated in the Fool’s Five as long as I can remember. My mom had cancer when I was 8 or 9, so it’s always been something big for my family to take part in. It’s a big cancer benefit and the community raises lots of money.

Last year was the first year the Be The Match Registry was at the race. My cousin and I were walking around and saw the table. We got a little more information and we both signed up.

Four months later — a match
When I was called, it was exciting, but a little nerve-racking, too, because I hadn’t really looked into the process. I was told I was a potential match for a sixteen-year-old boy, so I went in for more testing. A week later, I learned I was a perfect match.

When they asked if I was willing to go forward, there was no way I could say no. It’s a pretty awesome responsibility.

The donation process
(Note: Craig donated peripheral blood stem cells (PBSC). To learn about PBSC donation, see the PBSC donation process video.)

In between my class schedule, I would drive down to Minneapolis for the physical and the bloodwork, and then for my first shot of filgrastim. The next three days, a home nurse came to my house at school to give me the shots.

They said that I might feel achy from the shots, but it was nothing severe. I was working out, lifting weights, so I couldn’t tell if I was aching from that or from the shots.

For my donation, I was hooked up to the machine for eight hours. It got uncomfortable towards the end, but my parents were there and a nurse took care of everything I needed.

As soon as I was done, someone put my donation in a cooler and took it away to wherever it was going. It all went as smoothly as I could hope.

Volunteering
Because I was able to donate, I decided to help recruit potential donors at the Fool’s Five race this year.

A lot of people came up to me to talk about my donation experience. I was able to answer questions and reassure people who had reservations. We signed up another 101 people this year, so it was a pretty neat experience.

What I tell people

A small commitment can make such a large impact. It was two days out of my schedule and an essentially painless process. But it made a huge impact for a teenage boy, maybe saved his life. It’s nothing anyone should be afraid of.

Look into donating and get on the registry.

Update December 2010: Many Be The Match Registry members who read this story asked us why they hadn’t been called to donate after years on the registry. Unfortunately we can’t predict when – or whether – any individual will be asked to donate. On average, about one in 200 registry members goes on to donate. You could be a match for a patient tomorrow, or many years after joining, or you may never be a match.  A patient’s body will only accept marrow that closely matches the patient, and the system of markers being matched for transplant is much more complex than a blood type.

College student gets in the game – Patrick’s donor story

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Patrick Abdul was a leader in Wagner College football team’s “Get in the Game. Save a Life” marrow donor recruitment campaign in 2008. Their efforts added more than 200 students to the Be The Match Registry.

Two of those students have already been called as a possible
match. One of them was Patrick.

A two-year-old patient
Patrick went on to donate to a two-year-old boy with anemia. “The future for that two-year-old little boy hopefully is long and healthy,” says Patrick.

He hopes that his recipient “gets to do everything that I was able to do as a kid, with no health problems.… And grows up to play football, to be a strong guy like me,” he adds with a smile.

The chance to save a life
The chance to save a life meant a lot to Patrick. He was happy to be part of his team’s community service event adding people to the registry, but he didn’t give it much thought. When he learned he was a match, it really hit home for him that this was something real, something that mattered. He could actually be the one to save another person’s life. It was a great feeling.

The donation process
He donated peripheral blood stem cells (PBSC), which required getting shots of a drug called filgrastim for five days. The filgrastim moves more blood-forming cells into the bloodstream where they can be collected for transplant.

“I’m not going to lie,” says Patrick. The side effects of the shots felt like getting the flu.

“So that wasn’t too pleasant. But it was only for five days, and you’re giving someone a lifetime. It was 100% worth it to me.”

Patrick is featured near the end of the new “Get in the Game” video made to inspire coaches and players to get involved in adding donors to Be The Match Registry.