Why do I give? Because I feel grateful… and lucky

Posted January 9th, 2017 by Be The Match and filed in Patient Stories
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Transplant recipient and financial contributor Michael Stewart opens up about his relatively smooth transplant journey, and how he hopes to pay it forward to those who endure a different experience.

Michael Stewart, a husband and father of three teenage boys, is grateful for so many things in his life – including his transplant journey. In 2004, Michael was feeling fatigued, and so he set up a doctor appointment. As someone who “works too much” and travels a lot for his job, feeling tired was normal, but this time something felt “off.” Michael’s intuition was right, and after receiving lower than normal blood count tests, his doctors diagnosed him with hairy cell leukemia.

Michael received treatment for his illness, and within 6-7 weeks of treatment, everything felt like it was “back to normal.” Michael continued to be monitored for a while, but after 3-4 years they told him he no longer needed to come in for routine checks. His leukemia had come and gone, and Michael was ready to move on with his life.

Fast forward a few years, to 2013, and Michael started feeling fatigued again. He thought to himself, “I’m getting older and travelling too much… that must be it.” But just to be safe, Michael went back to his doctor. This time, his blood counts had bottomed-out. It seemed as though his hairy cell leukemia had come back. Only a few days later, Michael was admitted to the ICU with sepsis issues, which occur when the body’s immune response to an infection triggers inflammatory responses throughout the body. The inflammation brought on by sepsis can trigger a series of changes that can damage multiple organ systems, causing them to fail. It is also most dangerous in older patients or those with weakened immune systems from treatment – like Michael.

This time Michael spent more than 45 days in the hospital (with a few short visits back home), but his blood counts just weren’t bouncing back like they had in 2004. The doctors performed a biopsy of his bone marrow, which didn’t indicate anything additional was wrong. Michael again followed his intuition, and after not feeling back to 100%, he decided to meet with a doctor who specialized in hairy cell leukemia to see if he could figure out what might be wrong.

Near the end of 2013, Michael found out from his new doctor that he hadn’t suffered a re-occurrence of his hairy cell leukemia – he had in fact developed myelodysplastic syndrome (MDS). MDS affects the bone marrow and blood, causing the blood-forming cells in the marrow to slow down, or even stop, making all three types of blood cells: red blood cells, white blood cells and platelets. It was discovered that his MDS had likely been brought on by the two rounds of leukemia treatment he had received in the past, and the damage to his bone marrow was so severe that his blood counts couldn’t recover on their own. Michael’s doctor started him on a temporary treatment regimen, but the reality was, Michael would need a marrow transplant to survive.

Time for transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

Michael with his 3 sons, living in their temporary home in Seattle, preparing for his upcoming transplant

All of Michael’s siblings were tested, but none was a full match. As Michael continued his temporary treatment plan, his doctor started a search of the Be The Match Registry®, and luckily there were multiple match options identified. Although Michael felt like everything was back to normal – and his temporary treatment was working – he was told that every day he continued that treatment, his risk for developing yet another disease increased. Michael met with doctors at the Seattle Cancer Care Alliance and decided to be proactive by pursuing the marrow transplant while he was relatively healthy – knowing he would eventually need it – rather than waiting until his health stated to deteriorate. As a result, he and his family moved from Colorado to Washington to begin the process.

Although Michael had multiple match options identified through the Be The Match Registry, a few of the potential donors backed out for various reasons. Finally, a 24-year-old female – a complete stranger to Michael – came through. She was a 10 out of 10 match, and agreed to go through with donation to help save the life of someone she’d never met. Michael’s initial transplant date was scheduled for right after Thanksgiving, but after a few setbacks, it finally landed on New Year’s Eve. Michael rang in the New Year in arguably the most amazing way – receiving the life-saving marrow he desperately needed – from a complete stranger.

Michael's hospital whiteboard on the day of his transplant, and his "re-birthday"

Michael’s hospital whiteboard on the day of his transplant, and his “re-birthday”

Michael stayed near the clinic for a few months after transplant – with regular visits to the lab and clinic every day. He was allowed to work (from home) and spend time with his family, but he had to avoid public places and his energy levels were very low. At day 12 he engrafted – meaning his body accepted the donated marrow. Around day 45, he was finally able to see his dog again. And at day 98, he got to go home … 22 days earlier than expected.

While Michael was receiving treatment, his family was always by his side. In total, they spent about 150 days living together in a new state, but they embraced the experience and to this day they even look back on it fondly. Michael’s children were able to attend school at “The Hutch” along with other children whose family members were there receiving treatment, providing a sense of community and support that helped them through that difficult time.

Michael’s recovery has been phenomenal. Today, still less than a year out from his transplant date, Michael and his family are back in their home state of Colorado, and Michael is back to working full time and traveling. While he notices a lower ability to “bounce back” after a long travel day, he otherwise feels like he’s pretty much back to normal.

Thank you is not enough

As Michael reflects on his transplant journey, he feels grateful of course, but he also feels lucky. According to Michael, he had it “easy” – too easy, and too stress-free compared to so many of those who endure a long and frightening process, sometimes without a happy ending.

“No stress, no desperate pleas for friends and family to be tested. No social media campaign. Because many people all over the world decided to take the simple step of being tested, I had a match. I have a chance, and a very good one at that, to see my three boys graduate from high school, get married, have their own kids. All because someone did something for someone they didn’t even know and may never meet.”

– Michael Stewart

The Stewart's dog, minutes after arriving back home in Colorado after Michael's transplant journey - happy for things to be "back to normal"

The Stewart’s dog, minutes after arriving back home in Colorado after Michael’s transplant journey – happy for things to be “back to normal”

That is why, when Michael decided to give a large financial contribution of $25,000 to Be The Match, he did so out of pure gratefulness. Gratefulness for his relatively smooth transplant journey and positive outcome, especially knowing he had it easier than so many.

Michael is grateful to Be The Match for providing him with access to multiple donor match options, and so grateful for his donor who never hesitated to save a stranger’s life. She donated through bone marrow extraction which took 4-6 hours. A 24-year-old who was asked to spend all day at the hospital right before New Year’s Eve said “Of course I will,” and Michael is forever grateful for that. “Thank you isn’t enough … you just can’t even put that into words”, he says.

Michael is also determined to turn his gratefulness into action. He is dedicated to furthering the mission of Be The Match through his financial contribution and awareness efforts, to help those who have a harder time finding a match – particularly those with ethnically diverse backgrounds.

Michael worked with Keith Stout, Director of Major and Planned Gifts at Be The Match, to ensure that his financial contribution could help in a number of ways – financially assisting patients and their families, adding more potential marrow donors to the registry, and helping advance research to improve transplant outcomes. Michael hopes that his contribution can help ensure that one day no one has to wonder if they will find a match, let alone survive the process.

“I am blessed and lucky that I’ve had the outcome that I’ve had. Be The Match gave me the opportunity to have lots of matches. I’m a lucky beneficiary of what had already been accomplished before I needed a transplant, and the people who were already on the registry. Now I want to help grow the registry even more, so that other people can be told they have lots and lots of matches too.”

– Michael Stewart

Interested in joining Michael in supporting Be The Match?

Join the registry – you could be the match that someone is searching for.
Give – big or small, financial gifts help continue our mission to help patients and their families.
For more information on major gift opportunities contact Keith Stout, Director of Major and Planned Gifts, at 763-406-8150 or sstout@NMDP.ORG

Hope For Judah

Posted December 2nd, 2014 by Be The Match and filed in News
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In sub-Saharan Africa, an estimated 50-80% of children with sickle cell anemia will die before adulthood*. This is a fact that Maryl and Bryce never lose sight of.

High school sweethearts, the couple always knew they wanted to adopt and the day they met their sons—Judah and David—was the best day of their lives.

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The new family traveled home from the Democratic Republic of the Congo and spent the first two weeks of their homecoming nesting. “The first time we left the house was for the boy’s newborn wellness checkup,” says Bryce. Though the boys were 2-years-old, they had not had access to this important medical screening in the Congo. Everything looked good, but a follow-up call reveled devastating news—Judah had sickle cell disease.

Maryl, a nurse, immediately understood that sickle cell was a life-changing diagnosis. Thankfully, the initial care Judah required was minimal. Then, one morning something wasn’t right. Trusting their instincts, Judah was rushed to the hospital and an MRI revealed that their precious little boy had experienced a significant stroke.

“When we got the call that Judah had sickle cell disease I couldn’t look at our homecoming pictures without being mad. This wasn’t supposed to be us! Then, just about the time we got comfortable with how our lives would be dealing with sickle cell disease, Judah had his stroke,” says Maryl.

The news was hard to take in. Judah’s sickle cell had become much more serious, but a ray of hope shined though—a marrow transplant could be a cure.

“Our doctors explained that, because of his ethnicity, Judah’s hopes of finding a match were low—less than 20 percent,” says Bryce. “Then a 5 out of 6 umbilical cord blood match was located and we thought—wow! He has a match. It felt meant to be.”

Maryl and Bryce sprang into action. With the hospital 3 hours away, the family had to make some hard choices. They sold their house, and Maryl took time away from work so she could be with Judah 24-7. “It was hard, but we got through it,” says Bryce.

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In total, Judah spent 60 days in the hospital. Fifteen days preparing his body for the transplant and 45 days to ensure his immune system was stable enough for him to go home.  “Restricting a 2-year-old to a 12×12 room for weeks… Judah took it like a champ,” says Bryce. “Especially because he was too little to understand that the chemo and pokes were all for his own good.”

On December 11, the exhausted, but hopeful family was discharged to celebrate the holidays at home. “It was a hard holiday, but we left the hospital feeling like it was worth the sacrifice —that, because of this process, Judah would be able to celebrate many, many more holidays disease free.”

Sadly, on January 7, just as the family was dreaming of plans for a brand new year, they received heartbreaking news. Judah’s body had rejected the transplant.

“We had a lot of sadness after receiving this news,” says Bryce. “It was a true grief process, but we still had hope. We recognized that if Judah was still in the Congo, he would have experienced a very painful life—limited access to clean water, let alone medical care. But this wasn’t his path. He was matched with a family who loves him. His mother is a nurse and one of the best children’s hospitals in the country is only a few hours away.”

Today, the family makes monthly trips to St. Louis for Judah’s blood transfusions. Maryl and Bryce do their best to make “hospital day” fun, but Judah is starting to understand that his disease limits him, asking questions such as, “After no more sickle cell, then can we go to the lake?”

“We are grateful. Because of doctors, researchers and technology—his sickle cell can be cured. And we have dual hope—hope that Judah will find his perfect match and hope that we can inspire others—specifically first generation Africans—to join the registry because so many families have a loved one searching for their match,” says Bryce.

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Their faith and support from family and friends help them get through the day-to-day. “We are confident that Judah’s match is out there. If he had been cured at age two, we could tell him about it. Being older, he’ll better understand what he’s going through and, if we’re lucky, one day we’ll be able to hug the special person who will save his life,” says Bryce.

The family regularly host registry drives and does everything they can to spread the word about the need for marrow donors. “It’s given us so much hope to watch our community give, join or volunteer for Be The Match. For us, it means that people care about our son.”

Do something right now to help patients like Judah. Your dollars save lives.

 

*according to a study published by the Public Library of Science (PLOS)

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.