Follow up to “Why are there age limits for registry members?”

Posted August 23rd, 2018 by Be The Match and filed in Donor Stories
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Dr. Dennis ConferFrom Dr. Dennis Confer, Chief Medical Officer, National Marrow Donor Program

Our blog post in 2011 about age limits for Be The Match Registry prompted a lot of responses from registry members. Many of them were unhappy, in some instances, really unhappy, about the upper age limit. Be The Match Registry only accepts donors between the ages of 18 and 60. Registry members are automatically moved to inactive status on their 61st birthday. We’re happy that the post generated so much thoughtful and vigorous discussion. It shows the passion and commitment of donors toward helping patients. I will try to address some of the issues.

Transplant doctors prefer younger donors for their patients

In our previous post, we stated that one reason for the upper age limit is to provide the best treatment for patients. Doctors weigh many factors when selecting a donor for one of their patients; the age of the potential donors is one of them. Transplant doctors want younger donors. This preference is also data-driven; there are publications suggesting that patients with younger donors do better. See for example, http://bloodjournal.hematologylibrary.org/content/98/7/2043. Need to add Kollman BLOOD, 14 JANUARY 2016 x VOLUME 127, NUMBER 2.
Some of it is judgment. It is very clear that the bone marrow ages just like other organs; the cellularity of bone marrow declines with age. You can’t get as many cells out of an older donor as you can from a younger one, and higher cell dose improves the chances of success.

Additionally, there are little parts of each cell’s chromosomes, called telomeres, whose length reflects the residual ability of the cell to divide. Guess what? — the telomeres of bone marrow cells get shorter with aging. If you do bone marrow transplants serially in mice, the bone marrow poops out when the telomeres are gone. Can bone marrow from a 65-year-old donor last another 45 years or more in a 20-year-old recipient? We don’t know, but a lot of doctors are reluctant to do the experiment. Most would like to put young bone marrow in young patients, and older patients, too, for that matter. Finally, it is also true that diseases of the bone marrow, like myeloproliferative syndrome, myelosdysplastic disease and acute leukemia, are diseases of aging; their frequency begins to increase around age 45 and continues relentlessly throughout older age.

World Marrow Donor Association standards

The NMDP is one of 67 donor registries around the world that participate in the World Marrow Donor Association (WMDA, https://www.wmda.info), an organization that facilitates international donation and transplantation, and promotes the interests of donors. WMDA standards require donor registries to stipulate an upper age limit not to exceed 60 years. In fact, many other donor registries have set lower age limits for joining: age 55 in Germany, 50 in Canada, 40 in Australia and in the United Kingdom, 54 in Japan. Most of these registries consider members already on the file eligible to donate up to age 60. Maybe the NMDP could work around this standard if there was a compelling reason to do so, but the simple fact is — no registry in the world keeps donors past the age of 60.

Age is a factor in a person’s health

We know there are many people over age 60 who are in excellent health. There are also many who are not. I talked about aging bone marrow above, but other health problems also increase with age. The rate at which potential donors are found medically unable to donate is highest in NMDP’s older donors. This higher rate of medical deferral matters because it presents a risk to patients. When the selected donor turns out to be unable to donate, transplant may be delayed, which can jeopardize a patient’s likelihood of success. Medical deferral often happens late in the process, when the donor is being “worked-up” for donation, and it is a huge disappointment for everyone. This is another reason that doctors like younger donors.

Hitting the age limit

I myself turned 61 in March, 2011. I’m no longer on the registry and I am righteously indignant about it. I started exercising 3 years before and I had lost 20 pounds. I am in the best condition of my adult life. That nobody wanted me during the 20 years I was on the registry only further irritates me. But in reality, I would not be a good donor. There are more than 200 people with my HLA type on the registry and they are all younger than I am. So, there are other ways (in addition to doing my job) that I will be making a difference — and other ways you can, too. Contributing money or hosting a donor recruitment drive may not offer the same joy and satisfaction that the opportunity to donate marrow would, but these acts are crucial to saving more lives. I am also encouraging my sons to join the registry. They are young men and can be members for a very long time. And it’s about time they did something that makes sense!

 

Last updated: August 23, 2018

A donor-recipient meeting helps raise awareness among D.C. lawmakers

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Patient Stories, Volunteer Stories
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On March 20, in Washington, D.C., a first-time meeting between a marrow transplant recipient and her donor brought about tears of joy and forged a life-long connection between two women. But the meeting also raised awareness about how Congressional support is vital to help future patients get the marrow or cord blood transplants they need.

Be The Match arranged the first-time meeting between transplant recipient Kate Jauch and her donor, Kyndess Eaggleston, who was identified as the best match for Kate from among the more than 19 million volunteer donors listed on the Be The Match Registry.

The day after their emotional meeting, both women shared their experiences with Members of Congress at several legislative briefings arranged by Be The Match. Kyndess and Kate each spoke about the importance of advocacy, program funding, and access to transplant for Americans with blood cancer and other blood disorders.

“I was fortunate to have found a match, and we must continue to grow the registry for those who will need a transplant in the future,” said Kate. “This is why we are urging policymakers to protect access to transplant through increased program funding.”

At the briefings, both women spoke to Members of Congress and their legislative aides about how increased funding is needed to optimize access to marrow transplantation and to improve outcomes, particularly for Americans who might have difficulty finding a match or for patients where a transplant is their only chance for a cure.

“It was very moving to meet Kate in person and know that this is someone I will forever be bonded to through the Be The Match Registry,” said Kyndess. “I encourage anybody eligible to sign up to be a donor. They make the process easy and knowing you could potentially save a life is incredible.”

How you can advocate to help patients who need transplants

The first-time meeting between Kyndess and Kate raised awareness among the many Member of Congress who attended the briefings that for Medicare beneficiaries, funding for bone marrow transplants fall short of the actual costs of care.

Advocates such as Kyndess and Kate are urging Congress to act swiftly to pass HR 4215, legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment, including cell acquisition, transplant and recovery for older Americans diagnosed with blood cancers or other disorders.

As described on the Be The Match legislative advocacy webpage, HR 4215 will reform reimbursement to hospitals for the cell acquisition costs using a methodology similar to that used for solid organs. This policy would have a very small impact on Medicare’s total spending, but would ensure patient access to life-saving care.

Learn more about how you can advocate on this and other issues affecting access to live-saving transplants.

Volunteers advocate for Be The Match on Capitol Hill

Posted April 3rd, 2018 by Be The Match and filed in Donor Stories, Volunteer Stories
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Abby West offers this advice about navigating two full days of meetings with lawmakers on Capitol Hill: “Wear comfortable shoes!”

On March 5th and 6th, Abby met with 17 federal lawmakers or their legislative aides to promote Be The Match’s mission to ensure that cellular transplantation is available for everyone needing it. In addition, Abby worked to educate lawmakers about the need for increased funding to support the national registry of volunteer marrow donors.

Meeting with U.S. Senators and Representatives was new to Abby, and she says the experience was both exhilarating and eye-opening. “I’m always seeking new ways to be of service to the cause,” she says. “This was a new one that would further educate me about what Be the Match does to advocate for our future patients.”

Abby donated peripheral blood stem cells to a patient four years ago, which she says moved her deeply and motivated her to want to do more to support Be The Match. She joined the Be The Match Board of Directors a year after donating.

She reports that lawmakers were receptive to hearing about the mission of Be The Match. “Approaching politicians with our unique and unassailable critical care and life-saving mission meant hearing nothing but support,” she says.

Abby wants others who support Be The Match to not be shy about contacting their Congressional representatives, and notes that while in-person meetings may have the most impact, sending letters and e-mail messages, and making phone calls can all be effective, too.

Abby says that much of her conversations with legislators focused on urging them to co-sponsor and then act to pass HR 4215, which is legislation to ensure that future Medicare payment for cellular transplant reflects the true costs of treatment. Currently, Medicare rates do not cover the total costs hospitals incur when providing a bone marrow or cord blood transplant to Medicare-eligible patients.

Abby says that she plans to leverage her new connections with D.C. legislators to continue urging them for “more dollars to innovate and break down barriers preventing access to life-saving transplants.”

Be The Match has online information about how you can advocate for our live-saving mission, including ways you can urge your Congressional representatives to support HR 4215.

Access the Be The Match legislative advocacy web pages >

When GVHD just won’t go away, ECP may be the answer

Posted March 6th, 2018 by Be The Match and filed in Donor Stories
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Jason, transplant recipient

Extracorporeal photopheresis (ECP) is a potential treatment option for some transplant recipients with graft-versus-host disease (GVHD). It’s not a commonly known treatment and it’s more complicated and time-consuming than taking a pill. But it was the answer for Jason, a transplant recipient who endured several years of off-again, on-again bouts with chronic GVHD before ECP relieved his symptoms.

Jason’s experience with chronic GVHD

Jason says that he had anticipated getting GVHD after his transplant, and that he also tried to be mentally prepared for it. “But about 2 months into it I found out how GVHD drains you, takes your spirit away in a sense,” he recalls. “It really can affect your recovery.”

A few months after his transplant in 2011, Jason started to experience GVHD of the stomach and intestines. And then a few months after that, he noticed a red patch on his arm that his doctor confirmed was caused by chronic GVHD.

“So I started on prednisone and it worked,” he says. “But every time I tapered off the prednisone, the rash would come back on my arm, but also other places, my back and legs.”

That’s when he started asking whether ECP would be a good treatment option for him.

What is ECP, and who should be treated with it?

ECP uses light to damage the blood cells that cause GVHD. Dr. Laura Connelly-Smith, a hematologist at the University of Washington School of Medicine, describes ECP as “a procedure where an apheresis machine separates and removes some of the patient’s white blood cells. The collected cells are exposed to treatment with a drug and then “activated” by ultraviolet-A light (UVA) before being given back to the patient. This procedure is responsible for directly and indirectly damaging some of the T-cells that are responsible for causing the signs and symptoms of GVHD.”

ECP also helps “train” the recipient’s new immune system to become more tolerant, notes Dr. Connelly-Smith. “Unlike most other treatments for GVHD, we don’t think ECP will suppress, or hold back, the immune system. So, there is no evidence of increased risk of infection.”

“For people with GVHD, ECP is used when the GVHD doesn’t get better with high doses of steroid therapy,” says Dr. Connelly-Smith, who uses ECP to treat transplant recipients. Another use for ECP, she notes, is when patients like Jason can’t lower their steroid dose because their GVHD flares up.

Dr. Connelly-Smith also notes that ECP may be expensive. She recommends that you check to see if ECP is covered by your health insurance before you and your doctor decide to do ECP treatment.

In Jason’s case, his ECP treatments were every other week, 2 times per week, and his insurance company paid for the treatment.

More time-consuming than taking a pill

Jason’s experience with ECP treatment was typical. Each ECP session at the clinic would take 3-4 hours, most of the time spent lying in bed, and sessions were 2 times a week every other week.

“I maybe felt tired a little bit afterwards,” he says. “But I was able to continue to do things during the day.” Jason was working at the time, and so he scheduled ECP sessions really early in the day or late in the evening, which allowed him to work either before or after the treatments.

Not only is each ECP session time-consuming, but sometimes with chronic GVHD results may not be seen for 3 to 6 months. And Dr. Connelly-Smith notes that ECP is not helpful for everyone.

ECP success rates depend on what body parts are affected by GVHD, as well as the severity of the GVHD, she notes. Acute GVHD of the skin may get better in up to 8 out of 10 people, or up to 80% of cases, she says. For GVHD that affects the liver, stomach and intestines, it may not work quite as well. In these cases, according to Dr. Connelly-Smith, up to 6 out of 10 people, or up to 60%, will get better.

Progress after months of ECP

In Jason’s case, his doctor would re-evaluate his progress with ECP every 1-3 months. When Jason could taper off his prednisone while getting ECP without having his chronic GVHD symptoms flare up, he knew he had made real progress.

“ECP was a big part of me getting through this,” he says. But Jason also says that for him, both prednisone and ECP had a role to play in his recovery.

“For many people, prednisone works, and should be a part of the 1-2 year goal for recovery,” he says, while noting that ECP can be a huge part of a person’s recovery, too. “But ECP is a commitment,” he says. “If you’re committed to it, ECP may improve your quality of life.”

Questions to ask your doctor

It’s important to learn about your GVHD treatment options and ask your doctor questions. If you are considering ECP therapy, here are some questions you may want to ask:

  • Is ECP an option for me? Why or why not?
  • If I get ECP, when will we know if it’s working for me?
  • How much experience do you have using ECP to treat patients?
  • What are my options if ECP doesn’t work for me?

For more information about ECP, view our new fact sheet , developed jointly by Be The Match and the Chronic GVHD Consortium.

You can also contact the Be The Match Patient Support Center. Our BMT Patient Navigators can help you and your family get information and access resources and support. All of our programs and resources are free.

CALL: 1 (888) 999-6743

Monday through Friday, 8:00 a.m. – 5:00 p.m. Central Time

EMAIL: patientinfo@nmdp.org

World Marrow Donor Day is September 16!

Posted September 8th, 2017 by Be The Match and filed in Donor Stories, News
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Did you know that nearly 50% of all marrow transplants use international donations?

Be The Match is one of 100 organizations from 57 countries that celebrate World Marrow Donor Day. The day is dedicated to thanking marrow donors, as well as registry members, who are ready to donate to any patient if called. It is also a day to help raise awareness about marrow donation – both the need for volunteer donors and the impact it has on patients.

On behalf of all patients, we want to thank each donor for their selfless decision to donate to those in need of a life-saving marrow transplant.

We also want to thank all registry members for their continued commitment to help any patient. There are more than 30 million people across the globe who have registered to donate marrow to any patient if they are a match.

Many people are still unaware of the need for volunteer marrow donors and the process of marrow donation. You can help spread the word of the life-saving impact donation can have.

Help us celebrate World Marrow Donor Day!

  • Thank donors and registry members on social media by saving and sharing the Thank You graphic. Tag Be The Match in your post and use hashtags #ThankYouDonor, #WMDD and #BeTheMatch.
  • Use our World Marrow Donor Day Facebook profile frame on September 16:
    • Hover over your Facebook profile image and click “Update Profile Picture” then click “Add Frame”
    • Search for “World Marrow Donor Day” and select one of the Be The Match World Marrow Donor Day frames
    • Position the frame over your profile image and click “Use as Profile Picture”
  • Tune in as Nicolette Peloquin, peripheral blood stem cell (PBSC) donor and Miss Rhode Island 2017, goes live for a donor Q&A on the Be The Match Facebook page Sept. 16 at 3pm CT. She will talk about her donation experience and answer viewer questions.
  • Encourage friends and family to join the registry by sharing Join.BeTheMatch.org/WMDD2017

A story of life-saving generosity

Posted July 28th, 2017 by Be The Match and filed in Donor Stories
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Jox, donor, with his family

Being selfless can mean different things to different people.  Parents are often described as selfless when it comes to loving their children or giving them all they need in order to succeed in life.

But what do you call someone who has given so much of themselves to others?

Jox, with his mother-in-law, after donation (both center)

Jox is a 43 year old teacher, father and husband – and the ultimate altruist. In 2008, he donated blood-forming stem cells to help a searching patient in desperate need of a bone marrow transplant. But his selflessness didn’t stop there. Jox went on to donate a kidney to his mother in law whose kidneys began to fail after her battle with cancer, he cut off 10 inches of his hair for Locks of Love (yes, he had a “sick mullet”), and Jox has donated more than 11 gallons of blood to Memorial Blood Centers. Generosity is at the core of who he is.

Jox joined the Be The Match Registry during his college days, when a nurse brought it up during one of his blood donations.

Jox, donor

Fast forward to 2008 when he got a call that he was a potential match to a searching patient. Jox said he didn’t know a lot about the individual – only their age, gender and diagnosis. But he never once hesitated to commit. He donated bone marrow that same year, and said that the collection hurt less than raking the yard.

He recently reflected on the process; “It’s bigger than just the patient. My donation is extending someone’s life, and that not only effects the life of the patient but it also impacts the lives of their family and friends.”

Jox wants others to be inspired to sign up to the Be The Match Registry. When asked what he would say to other people considering joining the registry, he replied, “Do it yesterday. Put yourself in the situation where you need something and you’re out of options, but there are people who have exactly what you need to live. By donating, the person you are helping gets more time on earth to live.”

To join the registry on Jox’s behalf, please visit https://join.bethematch.org/DonorJox

“Having my wisdom teeth removed hurt worse …”

Posted June 13th, 2017 by Be The Match and filed in Donor Stories
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Samantha, marrow donor

“Honestly, having my wisdom teeth removed hurt worse than donating marrow. I was under anesthesia and not awake during the procedure. I was in the hospital at 5 a.m. and out by 11 a.m. For about a week and a half I was a little sore, like I had fallen down. And time-wise, it was nothing – especially compared to other things I’ve done, like being on the high school swim team with the grueling training before and after school.”

Samantha was fortunate to meet the man she donated to, Ron. “It’s mind-blowing and cool to think that something I did that was so simple let Ron walk his daughter down the aisle, see his son graduate from law school, and witness the birth of his first grandchild.”

When Samantha was 18, she was already a regular blood donor. When she learned about the need for marrow donors, she researched Be The Match online and joined soon after. “It just seemed like the right thing to do.” In October 2012, she got the call that she was a potential match for a 55-year-old man with acute myeloid leukemia. She went in for additional testing, then went on to donate.

Ron, transplant recipient, with Samantha, marrow donor

Samantha’s recipient, Ron

In 2012, Ron learned that his leukemia, which had been in remission for two years, was back. His doctors told him that a marrow transplant was his best and only hope for a cure.

With no siblings, Ron turned to Be The Match to find a donor match. Within the month, Ron’s doctors had narrowed the options down to two different donors – one of them a 21-year old from Texas—Samantha.

Ron and Samantha met in-person in 2014 at the Chicago Be The Match Walk+Run. Share in the moment which aired on Good Morning America.

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

Why I do what I do for Be The Match

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