“My hero, my warrior, my sister.” One patient saved by two donors who stepped up to make a difference

Posted December 7th, 2016 by Be The Match and filed in News
Show Content
Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana (middle) with her family and marrow donors, Jose and Fernando (to the right and left of her).

Briana had been crowned Homecoming Queen and was in the top five percent of her graduating class. She’d just been accepted to the University of Texas at Austin. But in March 2014, her dreams for the future were shattered when she was diagnosed with severe aplastic anemia. Her only hope for a cure was to find a matching marrow donor—a stranger who would come forward to save her life.

“Instead of preparing for college, I had to watch all of my friends begin without me,” she said. “It was a struggle to accept things weren’t going the way I planned.”

Briana’s doctors searched the Be The Match Registry for a donor, and in December, Briana and her family rejoiced when a matched donor was found. She received her transplant, and her faith in the future was restored. The family’s focus shifted to supporting Briana on her long road to recovery.

But their hopes were dashed again, when the donated cells did not engraft. The transplant had bought her time, but it had not been a success.

Briana had to find the strength inside herself to keep fighting. “My mind was just focused on getting through each day, not all the days to come,” she said. “I had come too far to just give up.”

Fortunately, another donor was found. And in March 2015, after going through another round of chemotherapy and radiation, Briana received her second transplant. Despite complications—including infections that required multiple surgeries—the second transplant was a success.

Today, Briana is a healthy 20-year-old with a unique perspective on life. “I went through something most people my age never have to experience, or even think about. I know now what kind of a woman I want to be. I’m going to change the world. There is nothing I cannot do.”

Briana’s transplant journey came full circle in November 2016 when she got to meet both of her donors, Jose and Fernando.

Her first donor, Jose, had been disappointed that his donation had not been a cure—but he was grateful to be part of the process that got Briana to her second transplant.

“The most memorable part of donating was the feeling that I was part of a life-saving experience,” Jose said. “I finally had a purpose in life to save someone else in this world.”

Briana’s second donor, Fernando, was equally moved by the experience. “The real heroes are the patients who overcome their illness, which affects them, that causes them anguish and pain. That is why Briana is my hero, my warrior and my sister.”

A Life-Saving Talley

Posted November 15th, 2016 by Be The Match and filed in Donor Stories, News, Patient Stories
Show Content

37 seasons. 256 wins. One national championship. More than 70,000 potential lives saved. These are just a few accomplishments of Andy Talley, head football coach of the Villanova Wildcats. Talley will retire from coaching following the 2016 season, but his commitment to saving the lives of those suffering from blood cancer will continue long after he walks 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.”

For more information about marrow donation, and the need for young men to join the registry, visit BeTheGuy.org.

Your holiday gift guide

Posted November 14th, 2016 by Be The Match and filed in News
Show Content

Looking for a way to give back while you shop for gifts this holiday season? Be The Match has a few ways to help you do just that.

Shop Be The Match. Browse our online shop for the latest Be The Match branded gear.

One-of-a-kind Be The Match ornament available through our online shop

One-of-a-kind Be The Match ornament available through our online shop

From hats to bags to drinkware, a portion of the proceeds from any item you purchase helps patients in need by adding more marrow donors to the Be The Match Registry, helping patients with uninsured costs and supporting life-saving transplant research. In November, you’ll receive a one-of-a-kind Be The Match ornament when you spend $40 or more in the shop. Sign up to stay connected to the latest products and special promotions.

 

Volume 8 of our holiday CD helps raise funds for patients in need

Volume 8 of our holiday CD helps raise funds for patients in need

Holiday CD Sampler. Get in the holiday spirit with our 8th volume of “A Minnesota Holiday” CD. All of your favorite traditional holiday songs are featured by artists from the Midwest, with a bonus track from Javier Colon, season 1 winner of hit TV show The Voice. A portion of all proceeds will benefit Be The Match and our mission to help save lives through cellular therapy. Available now for digital download on iTunes and in MP3 format. All Minnesota Kowalski’s Markets have the CD available for purchase starting November 25th.

Give back while you shop with AmazonSmile

Give back by shopping with AmazonSmile

AmazonSmile. Support Be The Match by shopping with AmazonSmile. Simply click on the link below to buy the items you already have on your list, and for each eligible purchase, Amazon will make a donation to the Be The Match Foundation. Start using Amazon Smile today and show your support for patients in need.

 

Best friends both called to donate — “It felt like fate”

Posted November 11th, 2016 by Be The Match and filed in News
Show Content

registry-enews-110416Best friends Brad and Miranda joined Be The Match Registry at different times and for different reasons. Brad signed up online after a friend posted on Facebook about a friend with leukemia. “I hadn’t heard about Be The Match before joining,” said Brad, “but it seemed really easy.” Miranda was at a campus blood drive when she was asked if she’d also like to sign up as a marrow donor. “I said, ‘sure, why not.’ There was no reason to say no.”

 Neither of them could have guessed what a difference their decisions would make.

About two years later Miranda got the call asking if she’d donate to a man in his 70s–the same age as Miranda’s grandpa. And not long after, Brad got a similar call, asking if he would donate for a woman, also in her 70s.

“I took a couple days to really think about it,” said Miranda. “I was worried about falling behind in school, but I also felt like I was meant to take this opportunity. People can sit on the registry and never donate. And now I had a chance to cure someone, to give them more time with their family. It felt like fate.”

“I had really mixed feelings when I got the call,” said Brad. “I had a full-time internship, and worried about how it would all work out. I also thought about the pain of donating, but in the end it didn’t matter. When you donate you’re trying to stop death. Why wouldn’t you do it? It was stressful but also really exciting.”

Brad and Miranda both ended up donating peripheral blood stem cells (PBSC) within five days of each other, Miranda going first.

For four days leading up to her donation, Miranda received shots to increase the number of blood-forming cells in her body. “The shots were not very pleasant, but I reminded myself that the pain only lasted five seconds. And I took some pain reliever to stay on top of the side effects so I could make it through a full day of school. In the end, I never missed a class.”

On the day of her donation, Miranda settled in to binge watch “Arrow,” expecting the donation process to take the usual 6-8 hours. But just two-and-a-half hours later, she got a tap on her shoulder that she was done. The staff at the Apheresis center called her donation “spectacular.”

Brad’s donation also went quickly. “It was a strange sensation, but not negative. It was actually relaxing. The total time at the hospital was about 6 hours.”

“The donation was way easier than I expected it would be,” Miranda said. “I’d do it again in an instant if it meant I could save another life.” Brad agrees. “It was easy and everyone was very appreciative of what I was doing. Yeah, there was a little pain and it was a little stressful, but I would do it again. It was a great feeling.”

Brad and Miranda have both received updates that their recipients are out of the hospital and doing well.

Caregiving for a child

Posted November 8th, 2016 by Be The Match and filed in News
Show Content

Being a parent is a privilege. But it’s also challenging, especially when your child is ill. To honor and celebrate parent caregivers, we’re sharing 3 parents’ stories. You may find ideas for your own family. But remember, what works for you depends on a number of things, including your child’s age, your parenting style, and your family.

Meet the families 

Lizzie, transplant recipient

Lizzie, transplant recipient

Kathy’s daughter, Lizzie, was born with Diamond-Blackfan anemia, a rare disease where the body doesn’t make red blood cells. As Lizzie got older, her body started having problems. With the support and guidance of her family and health care team, Lizzie made the difficult decision at age 18 to get a transplant.

Lizette (left) and her daughter Amanda (right, transplant recipient)

Lizette (left) and her daughter Amanda, transplant recipient

Lizette’s daughter, Amanda, had sickle cell disease – an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and block blood flow. People with sickle cell disease have repeated episodes of excruciating pain and worsening permanent damage to vital organs. Just as Amanda turned 15 years old, she had a transplant.

 

Anne (right) and her son Caleb (left, transplant recipient)

Anne (right) and her son Caleb, transplant recipient

Ann’s son, Caleb, was 19 months old when he was diagnosed with a very serious autoimmune disorder called familial hemophagocytic lymphohistiocytosis. Caleb’s immune system didn’t fight infections like it was supposed to. Instead, it damaged Caleb’s own body. He had a transplant just before he turned 2.

 

Challenges with medicines

“For the most part, Amanda understood why she needed to take her medicines and was good about doing so, but there was 1 medicine that she didn’t want to take that helped control seizures she developed as a result of chemotherapy. Her doctor asked her to take it for at least a year, which she did. But when her doctor told her she needed to keep taking it after that year, Amanda resisted. We tried everything. What finally worked is when we explained the consequences of her not taking the medicine. She was old enough to get her driver’s permit, but we explained that it would be dangerous to her and to others if she drove and wasn’t taking her medicine. Once she could show us that she was committed to taking the medicine, we arranged for her to start driving classes.” – Lizette

“Caleb was so little he didn’t know why he had to take his medicines. He’d fight us and we would have to hold him down so we could squirt them in the back of his mouth. It was hard to do, but we got them in him. As he got older, we tried flavored meds, but he still hated them. Eventually, we found chocolate syrup cut the bitterness of the cyclosporine.” – Ann

 Coping with limitations

“We really limited the people who came to visit Amanda because we wanted to lower her chance of getting an infection as much as we could. She understood, but not having interaction with her friends was really hard on her. Amanda also missed being able to go shopping with her friends at the mall. So, I came up with a solution. The mall was too crowded, but Amanda also loved stationery — paper, pens and highlighters were all her thing. We took her to an office supply store since we knew there would be fewer people there. She walked in, wearing her mask of course, breathed in and said, ‘I love that smell of new stationery!’ It was a good way for us to get her out of the house in a safe way, and help her feel normal.” – Lizette

“When Caleb wasn’t healthy enough to go outside, he would sometimes cry at the window because he wanted to play in the yard with his sister, Hannah, who was 5 at the time. So, we made an indoor backyard in the basement. We included an outdoor scene with birds, rabbits and fish painted on the walls, and a fuzzy green blanket for grass.” – Ann

Taking time for yourself

“We live in Arizona and Lizzie’s transplant team was in Minnesota, so that was a challenge. We were fortunate to plan for her older brother and sister, family and friends to make the trip and spend time with Lizzie. This gave my husband and me time to step away and recharge. Throughout those early months after transplant, being able to spend time with her friends was a BIG deal. And her friends were amazing. We scheduled times for them to come and be with her so she was never alone. After a while, her friends knew what to do and how to help her. So by noon most days my job was done. Her friends took over and I managed the big stuff.” – Kathy

“Looking back, I wish I would have accepted more help. At the time, I was so focused on what I had to do, I wasn’t good at letting other people get involved. And frankly, I was terrified at the thought of leaving Caleb with anyone overnight. But it’s so important to take time to yourself, to take care of yourself or go out on a date night. It helped so much to get away for a few hours.” – Ann

Accepting help from others

No one can manage all the responsibilities of being a parent and a caregiver alone. Think about your needs and ask yourself:

  • Who has offered to support me and my child?
  • What tasks do I have and who can I ask for help?
  • When can I schedule 15 minutes for myself?
  • What activities help me relax and recharge?

Support and resources for parent caregivers:

November: A month to honor and celebrate caregivers

Posted November 8th, 2016 by Be The Match and filed in News
Show Content

It can be easy for caregivers to forget about their own needs. But one of the most important things caregivers can do is to take care of themselves. November is National Family Caregivers Month. To honor and celebrate caregivers, we’re sharing one woman’s story. We encourage you to share this with the caregivers in your life.

Robin’s story

One phone call was all it took for Robin’s world to be turned upside down. Her mother, Gail, had just spent 2 weeks helping Robin and her husband, Kevin, take care of their newborn baby, Charlie. Then a few weeks later, they learned that Gail had acute myeloid leukemia (AML).

Gail had chemotherapy to treat the AML, but it didn’t work. The AML came back. That’s when Gail’s doctors said a transplant would be her best treatment option.

Here’s Robin’s story, in her own words, about her experience as a caregiver and how she cared for herself.

 New family roles 

Robin (right) with her son Charlie, and her mother Gail (left, transplant recipient)

Robin (right) with her son Charlie, and her mother Gail (left, transplant recipient)

“When my mom was diagnosed with AML, Charlie was just 7 weeks old. We went from the high of having a new baby and my mom being a nana for the first time to to what we call ‘THE PHONE CALL.’

There was never any question that I would be my mom’s caregiver. I knew I would be there for her just as she’d been there for me. My mom moved in with us, and it wasn’t always easy. One of the biggest challenges was the shift in roles within our relationship.

We very much had the traditional parent-child relationship, and that changed overnight. It was really hard for both of us. It wasn’t easy for me to tell my mom, ‘No, you can’t do that.’ It was just as hard for her to ask me for help.

It was also hard for me to push her to do things sometimes. For example, my mom didn’t want to meet with a registered dietitian because it was ‘just one more appointment to go to.’ But nutrition after transplant is so important. I struggled with all of the food safety precautions, not to mention her changing tastes.

When we finally met with the dietitian, I thought, ‘That would have been so helpful 6 months ago!’ I didn’t want to make my mom feel like a child by insisting we make the appointment, but it would have saved me so much time and frustration.

Time to recharge

Throughout the transplant journey, Kevin kept reminding me to take care of myself so I could be the best mom for Charlie and the best caregiver for my mom. It was easier said than done. For a long time, taking care of myself was vegging out at the end of the day and watching a really bad reality show on TV! It took me a long time to be okay with that. Sometimes I felt like I’d failed because I wasn’t ‘making time for myself.’

Then, I realized that while I might not have been taking a yoga class, I was doing things for me. Spending an hour hanging out on the couch with my mom or lying on the floor with my son doing tummy time … that was awesome. Now I’m to the point where I can set aside time to go out with friends or exercise, but at the time I just couldn’t do it.

While the transplant journey hasn’t been easy, there have been many positives along the way. My husband and my mom have gotten very close, and it’s been fun to watch. I didn’t think it was possible, but my own relationship with my mom has gotten closer. Seeing what my mom has gone through has made me appreciate everyday things so much more.

As a caregiver, the journey ahead of you won’t be easy, and sometimes it may seem like there is nothing to be happy about. But, there is always hope. There is good that will come out of this. You might not see it today, but it will come.”

Your sense of self

As you care for your loved one throughout recovery, the following questions can help you be mindful of your thoughts, feelings, and actions:

  • How has my life changed — for better or for worse?
  • What new goals would I like to set for myself?
  • What steps can I take to begin working toward my goals?
  • What can I do each day to take care of me?
  • How can I balance my role as a caregiver with other parts of my life?

More information for caregivers

 

Twin sisters meet their life-saving donor at Be The Match Gala

Posted October 12th, 2016 by Be The Match and filed in News
Show Content
Twin sisters and marrow transplant recipients, Elizabeth and Kathryn, with their family, and marrow donor Ingo and his wife.

Twin sisters and marrow transplant recipients, Elizabeth and Kathryn, with their family, and marrow donor Ingo and his wife.

“Thank you for your selfless act of being our daughters’ donor. You will forever be our hero!”–the girls’ mother, Michele, to their donor, Ingo.

Michele and Brett were overjoyed by the birth of their identical twin daughters Elizabeth and Kathryn. But within hours, they learned that something was terribly wrong. Both girls had low platelet counts, low hemoglobin and no clotting agents to prevent excessive and potentially fatal bleeding. The newborns were rushed to a larger hospital where they could get the intensive care they required. It was only the start of a long and difficult journey for the entire family.

The girls were diagnosed with a rare and fatal genetic disorder. During their first four years, frequent transfusions kept the girls relatively healthy, but they knew their marrow would eventually fail. Their only chance at survival would be to find a matching donor—a stranger willing to step forward to save their lives.

“My heart goes out to any mother who has a sick child,” Michele said. “It’s one of those things that you just don’t understand until you experience it.”

Nearly thirty years earlier, a little girl in Germany was searching for a match. Many people were moved by her story and joined the registry to help her. One of them was a young man named Ingo.

While Ingo was not a match for that little girl, he was thrilled to receive a phone call—almost 25 years later—informing him that he was a potential match—not just for one patient, but for young, twin girls both needing a marrow transplant. Ingo shared the exciting news with his wife and children; “We all rejoiced … I have a daughter who is now 14 years old … there was no question whether I would donate.”

Ingo is proud of being able to help this family and give these two young girls a second chance at life. “I encourage everyone to join the registry,” he says. “It’s a great feeling to help other people.”

Today, Elizabeth and Kathryn are happy and healthy nine year olds who love horses, doing the hula hoop and playing with their older brother Lee Roy. “They can now just be normal little kids again and that’s what we want for them,” said their father Brett.

Share the excitement as Elizabeth and Kathryn meet their donor for the first time .

Be The Match Gala

Elizabeth and Kathryn met Ingo for the first time at the 9th annual Be The Match Gala. Thanks to the generosity of attendees and supporters, this year’s gala raised more than $400,000 to help patients in need. For information about attending or supporting next year’s event, visit BeTheMatch.org/Gala.

Graduate of Yale Law School, Olympic hopeful faces greatest challenge yet

Posted October 12th, 2016 by Be The Match and filed in News
Show Content
Olympic hopeful and Yale Law School graduate, Seun, was diagnosed with two potentially terminal blood cancers at the age of 26.

Olympic hopeful and Yale Law School graduate, Seun, was diagnosed with two potentially terminal blood cancers at the age of 26.

Seun is not the kind of guy to back down from a challenge. Not only is he a graduate of Yale Law School, he is also a skeleton racer—a winter sport similar to luge—with his eye on competing in the 2018 Winter Olympic Games.

But no amount of study, practice or discipline could prepare him for his greatest challenge—being diagnosed with two terminal blood cancers one week before his 26th birthday. He needed a marrow transplant, and fast.

The bad news got worse, when he learned that his Nigerian ancestry could make it harder to find a match. Because patients are most likely to match someone of the same ethnic background, he turned to his homeland in hopes of finding a donor.

Unfortunately, Nigeria didn’t have a registry. But Seun wouldn’t take no for an answer. Instead, he launched Nigeria’s first bone marrow drive. And while Seun was busy helping improve the odds that other patients could find a match, an umbilical cord unit on the Be The Match Registry would his life-saving cell source.

Seun received his transplant and is back in training, on track to pursue his Olympic dreams.

 His career, however, has changed course. He switched from a legal career to working for the American Cancer Society, committing his life to helping other cancer patients gain access to treatment.

And he didn’t stop there. He has also helped start Nigeria’s first marrow donor registry, so people of African ancestry can find their match—no matter where in the world they live.

Why I do what I do for Be The Match

Posted September 27th, 2016 by Be The Match and filed in Donor Stories, News
Show Content

As told by Jeff, donor and advocate

“Save this girl’s life and I’ll be an advocate to the cause for the rest of mine.” This was the short prayer whispered just before I was anesthetized to harvest my bone marrow that was perfectly matched to a sixteen-year-old girl fighting leukemia. Eight years later, I’m please to share that my recipient, Kim is living life to the fullest with my adopted immune system. 100% engrafted and cancer-free!

Within a few days of the procedure life returned to normal, but my appreciation for it was different. Somewhere out there was a young lady fighting for her life and I knew that her family was asking themselves the same questions that I was. Were my cells good enough? What would happen if they weren’t? At the very least I knew that the procedure would give this family something that they had longed for, which has been confirmed by countless other families fighting a blood cancer. For many a bone marrow transplant can be a cure, but for all it provides hope.

To me, a bone marrow transplant is the perfect fusion of fate, science and miracle. Fate, to know that a compatible stranger chose to join a bone marrow registry; science, to facilitate the process; and miracle, to know that these life generating transplanted cells can alter the course of another person’s mortality. Believing this – I had to get involved further.

I started my advocacy at marrow drives, lending a hand to dismiss the fears about the donation process. As we all benefit from talking to others with firsthand experience; attending these drives helped educate and answer questions of those interested but concerned about the procedure. Several people join the registry, as I did, for someone they know who is in need of a transplant. At these drives, I help folks see the “Pay It Forward” concept. Although you may not be a match for the person you know, you could be for someone else in need, just as another person joining at another drive somewhere out there may be a match for your acquaintance.

I am involved with the CIBMTR (Center for International Blood and Marrow Transplant Research) which is the research program of Be The Match. As a consumer advocate, I’ve participated over the last five years helping to translate information, such as outcomes from a clinical trial into a readable format for the typical lay person to understand. It was an honor to be asked this past year to co-chair this advocacy group.

I’m also very proud of the money raised by co-chairing a local Be The Match Walk+Run event for the past three years. These events bring together survivors, caregivers, patients and donors to celebrate victories, honor those lost and help recruit new potential donors to the registry.

Finally, I take the most pride in my volunteering efforts as a stem cell courier. The transplant process is a logistical orchestra of physicians, scientists, lab techs, collection center personnel and transplant hospital staff all coming together for a patient in need. It is a privilege to hand-carry these coolers containing someone’s “second chance” from their altruistic donor to their intended recipient. A trained volunteer courier is as close as it gets to being Santa Claus.

If you read this chances are you’re already somehow involved with the cause. Mine are but a few of the many ways to help and I encourage all to engage. Maybe it’s writing to congressional members in support of NMDP/Be The Match’s legislative activities; or it’s reaching out to a local recruiter and helping in your community. Whether you’re a caregiver, a long term survivor or a fellow donor – we all have unique experiences that are vital to the next patient in need. As for me, I’ll keep holding up my end of that prayer.

Dale’s Letter to His Daughter’s Marrow Match

Posted September 20th, 2016 by Be The Match and filed in Donor Stories
Show Content
Dale's daughter, Eva, in the hospital two weeks after she was diagnosed with Leukemia.

Dale’s daughter, Eva, in the hospital two weeks after she was diagnosed with Leukemia.

August 26, 2014 is a day that will forever be branded in our minds. That’s the day our doctor told us “Your daughter, Eva, has leukemia”.  When you hear the word “leukemia” and you aren’t prepared, the word scares the hell out of you. You’ve heard it before but really what is leukemia?

 We were terrified. Genetic testing showed that Eva had a high-risk form of leukemia with a higher chance of the disease coming back after treatment and lowered chance of long term survival.

We began hearing new words like “bone marrow transplant” and “donor” and found out that Eva’s life would be in the hands of a complete stranger.

Chemo could kill the cancer and doctors could give our daughter a fighting chance, but without a bone marrow transplant, there was no chance for long-term survival. We immediately began the search for an unrelated donor on the Be The Match Registry®. Doctors said it could be months before a match might be found, and that there was a chance we’d never find one.

Soon we hit 90 days since Eva’s diagnosis, 80 days in the hospital in isolation, and two rounds of intense chemo and recovery.

Then the most wonderful thing happened. Our nurse gave us the news that Eva had a match. Someone was willing to give Eva a second chance at life. It was an amazing feeling to think that in all of the world someone had said, “I don’t know you, but I am willing to give to you what I have.”

Our hematology/oncology and bone marrow transplant teams worked together set a transplant date, and confirmed with “our donor” that the date worked with them and they were ready to move forward.

Leukemia can be a rollercoaster ride. Plans can change quickly. Eva developed an infection following chemo. We received heartbreaking news that Eva was not healthy enough for her transplant. She would need another round of chemo.

As scary as this was, we wondered about the donor. Would they want to continue with us after this change in plans? We were happy to learn that our donor was flexible with Eva’s needs and a new transplant date was set.

Eva contracted another infection following the next round of chemo and needed surgery. This pushed out the transplant date…again. We were worried. Our donor had to be struggling and anxious with all of these changes. We couldn’t imagine what they were experiencing. They didn’t know Eva or our family. We were strangers.

A new transplant date was set yet again. We were all looking forward to it. It became a day of hope.

After the last round of chemo, we checked into the Ronald McDonald House so we could be close to the clinic for more tests. Everything seemed to be going well until Eva suddenly developed a fever. Such a simple word can carry so much fear when battling leukemia. A fever literally scares you to death because her immune system wasn’t strong enough to fight off infections.

Then we got the news we never wanted to hear. After many tests, our team called me and my wife into a small room. They said, “We have done all we can for your daughter. It’s time to take her home and spend her final days with family”.

I cried during the drive home, but somewhere along the way I had a thought that cut me to the core: What and how would they tell “our donor”?  This is someone who said, “I will do what I can to help.” After all the tests and the many date changes, it’s now all over. This person doesn’t know us and as far as they knew, they were going to help save a life. How would they tell this person and how would they take the news? My heart went out to our donor.

We said good bye to our baby three days after her 17th birthday. To say it was hard to get back to what was now our life does not come close to describing it.

It wasn’t long after we started thinking about “our donor” again. This person had been so much a part of our lives for months and even today holds a special place in our hearts.

We want to take this time to thank all of the special people out there who come forward and offer to give life to others. Many complete the process and are able to enjoy contact with the patient and their families. Others are never matched. Others, like our donor, are selected and for some reason the process stops before the transplant.

You are all heroes in our heart and the hearts of other families. I hope this note is read by “our donor” and they know how much you mean to us. Thank you for saying yes over and over again. You will always be in our hearts, minds and prayers.

Thank you cannot express our deep appreciation but what more can we say, thank you.