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

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.

Life: The Most Precious Gift

Posted November 5th, 2013 by Be The Match and filed in Donor Stories, Patient Stories
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Ava with caption  Janet and Ron give thanks for Ava’s life every day. When Ava was just six months old, they took her to the doctor with what they believed was “just a cold” and learned she had a life threatening blood disease. They were devastated, but the doctors offered them one glimmer of hope—a marrow transplant could be a cure. On January 7, 2011, two months after her first birthday, Ava received her marrow transplant and was given a second chance at life.

Below is Janet and Ron’s first letter to Michelle, the young woman who donated marrow to save Ava’s life. A donor and recipient must wait one year before they can exchange contact information, if the donor center allows and both parties consent. Prior to that time, anonymous messages may be sent through their donor center and all identifying information is removed.

Dear “Anonymous 20-year-old ANGEL in PA,”

How can we ever thank you for the sacrifice and gift you have given us? How do you thank someone for saving your child’s life? How do you thank someone for stepping up for a complete stranger? I have wanted to write this note for some time now, but adequate words fail me.  

THANK YOU for registering with Be The Match. THANK YOU for answering “the call.”  THANK YOU for facing the nerves and fear you must’ve felt.  THANK YOU for enduring the pain and discomfort during and after the harvest, especially during the holidays.  THANK YOU for being THE ONE for our sweet baby girl!  

We are 4 months post transplant and “A” is doing remarkably well. While there have been a few bumps in the road, she and her (your) new immune system are getting along great. So far so good. Pre-transplant, “A” clearly didn’t feel well and it affected her sleeping, eating and disposition.  Post-transplant, she is a whole different girl—happy, happy, happy! We have remarked to each other several times: “that donor must have a sunny disposition!”

“A” is our first and only cherished child, and it certainly has been a roller coaster year with her illness. But I am telling you, your magic bone marrow has changed the course of our lives forever. I hope it gives you enormous pride and comfort to know that you hold responsibility for that. Thank you for giving us back the future we have hoped and dreamed and planned for!

I hope one day we can meet, but for now, sweet angel, I hope you are happy and proud, and peaceful and loved.   

With thanks and eternal gratitude,

“Anonymous parents of your 17-month-old marrow recipient”

You have a power to give a child the gift of life. Learn more.

Little Ava met Michelle in September 2013. Watch the heartwarming video.

“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!”

Abby’s Donation Story

Posted October 8th, 2013 by Be The Match and filed in Donor Stories
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Abby-203pxAbby first learned about Be The Match® at work in 2011 through her boss. She was asking others to register for a friend who had been diagnosed with leukemia. Wanting to help, Abby joined the Be The Match Registry®. Unfortunately, she was not a match for her boss’ friend, but just three months later, she got a call telling her that she was matched to a 15-year-old boy in California. Abby donated marrow, extracted from the pelvic bone through an outpatient surgical procedure, to her recipient six months later and describes her journey as “the best experience ever!”

How did friends and family react?

Abby felt a mix of emotions when she told friends and family she was going to donate marrow. Although her loved ones were excited about her decision, they were also nervous and scared. They had many questions to be answered, and they wanted to make sure that the procedure would be safe for her.

Abby educated her husband and two children about the procedure in hopes that they would understand how determined she was to help. She was able to ease their fears, along with those of her friends and family, and their support became a crucial factor to the success of her donation.

Abby’s donation journey

Abby had one main worry when going through with donation. “My main concern was, ‘will I have enough marrow?!’” said Abby. Being very petite, she was afraid that her body would not be able to give enough marrow to help cure her recipient. Abby’s donor center, doctors, and loved ones all reassured her that everything would go well, and her procedure was a complete success! “The doctors, nurses, and Be The Match always answered any questions and or concerns I had,” said Abby.

After donation, Abby experienced some side effects. These side effects consisted of nausea, pain, fatigue and weakness. However, they did not last long and Abby was shortly back to her regular routine. Looking back on her experience, Abby explains that she did not realize how much the donation would change her.

Connections with Abby’s recipient

Recently, Abby was able to get in contact with her recipients mother*. They talked for more than two hours, sharing each other’s journey, what their lives are like now, and learning more about one another’s family. Abby was also able to hear the great news, first hand, that her recipient is now 95% recovered and is doing extremely well. Both families are looking forward to meeting in the future, and share a connection that cannot be replaced. “Emotionally, it was an amazing experience. I was left with a great feeling inside of me that will last a lifetime.”

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.

Ray’s Donation Story

Posted July 2nd, 2012 by Be The Match and filed in Donor Stories
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Ray donated bone marrow to his son Morgan in 2010Ten years after Ray’s brother, Dwight donated peripheral blood stem cells (PBSC), Ray was also given the extraordinary opportunity to save a life—but this time for his own son.

The diagnosis and treatment plan

Ray’s son, Morgan was diagnosed with Acute Lymphoblastic Leukemia, a fast-growing cancer of the white blood cells, in 2008 at the age of 12 years old. Immediately after he was diagnosed, Morgan was sent to Denver to begin his aggressive treatment.

The approach to Morgan’s treatment was to kill the diseased blood cells at the different stages of development. The first stage, induction chemotherapy was intended to bring Morgan into remission. The second stage, consolidation was a second phase of chemotherapy intended to reduce the number of diseased cells in the body. The third and final stage, maintenance was intended to destroy any remaining diseased cells so that the leukemia was eliminated from Morgan’s body.

In 2010, Morgan relapsed. “We were told that Morgan would need a bone marrow transplant,” said Ray. “Those were doors we never wanted to have to go through.” And so began Morgan’s search for a match.

The slim chance of a related donor

When patients first begin their search for a donor, they look for a match within their immediate family. In most cases, 70% of patients do not have a suitable match in their family.

In his family, Morgan’s best chance for a match was with his brother—a 25% chance. When the results came back that his brother was not a match, Morgan’s parents got tested. Parents, because they only provide half of a child’s DNA have a slim 5% chance of being a match. Luckily, Ray was determined to be a match, and after further confirmatory blood testing, it was decided—Ray would donate bone marrow to Morgan.

“I was excited,” said Ray. “I am a full time firefighter and I’m used to fixing things, but at that moment I knew I could help save my son’s life.”

Donation day — The day that would change their lives

“The day of the transplant was like a wedding or a college graduation—it was a big day,” said Ray. The bone marrow donation itself was fairly uneventful for Ray.  He felt a little discomfort from the intubation (insertion of a tube to help the patient breath while under general anesthesia), but it was minimal. Two days after his donation, Ray tried to climb up a flight of stairs and felt a lack of energy. However, after a week or two Ray was back to his old self. Doctors typically suggest that bone marrow donors take it easy the week following donation, because they might feel more tired as well as some slight lower back pain.

Rare connection between brothers

“It’s a unique and unusual bond that we have,” said Ray about his bond with his brother, Dwight, a peripheral blood stem cell (PBSC) donor. “A rare circumstance that we can both claim that we are marrow donors, that we were able to make such a significant difference in someone’s life.”


Editor’s Note:
Ray’s son, Morgan is currently in remission and just completed his 2 year checkup. Their family should receive his test results in about five months.

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

Friendship, Commitment Save a Life – Guy’s Story

Posted January 20th, 2010 by Be The Match and filed in Donor Stories
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Guy Miller, of Mobile, Ala., joined the Be The Match Registry® out of friendship. And he was a match—not for his friend who needed a transplant, but for a stranger.

Guy took his commitment to the registry just as seriously as he took his friendship. In 2004, he donated marrow to save the life of a young man he didn’t know. “I gave out of the original intent I joined for—that was for a friend of mine,” Guy said.

Five years later, he met Mark Schuh, the young man whose life he’d saved.