Neil had spent his whole career in the fitness industry. He was a trail ultramarathon runner and an avid hiker. “Staying active was a part of my everyday life,” he said.
But in October of 2016 at his annual checkup, his blood tests came back abnormal. A bone marrow biopsy revealed chronic myelomonocytic leukemia (CMML), a rare blood cancer.
Neil was referred to the Dana-Farber Cancer Institute and his blood count held steady for a while. But a year later, the leukemia had progressed. And in January 2018, it was determined he would need a bone marrow transplant—but first, a suitable marrow donor match would have to be found.
While the search for a donor match continued, so did the progression of Neil’s CMML—the transplant couldn’t wait. So, in June Neil’s son, Aaron, donated his marrow as a haploidentical (half-matched) donor. And soon after the transplant, Neil was back on his feet—not just walking, but biking and hiking.
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Unfortunately, by November 2018, the transplant started to fail, so Neil started chemotherapy to try to slow the cancer’s progression. “I was so weak in spring of 2019, I didn’t trust myself to hold my first granddaughter when she was born,” Neil said. He was admitted to the hospital and began another round of chemotherapy as the search for a closer donor match continued.
By fall, Neil’s weight had dropped significantly. “I was horrified to see myself and the toll it took on my body. I went from being so active, to not even being able to wash my hair.” That’s when a well-matched donor was finally found.
Neil’s transplant wasn’t scheduled until late November, but his doctor didn’t think it could wait. Thankfully, Neil’s marrow donor agreed to move his donation earlier.
After his transplant and a serious setback of sepsis and brain swelling, Neil slowly began to recover and rebuild his strength. By summer of 2020, he was back hiking in the mountains.
Neil later learned that his marrow donor, Benjamin, was from Israel and joined the Be The Match Registry® sometime between Neil’s first and second transplant. “I often think about how miraculous it is that Benjamin joined the registry right when I needed him,” he said.
Today Neil’s grateful to wake up every day—to walk, lift weights and be with his family (and his second granddaughter!). He and his wife recently celebrated 44 years of marriage and Neil says that seeing her dedication and feeling the love of his children is what gave him strength throughout his journey.
He credits his family, the team at Dana-Farber and Be The Match with saving his life. “If one of these three pillars weren’t there, I may not be alive today,” he said. To pay it forward, he’s generously including Be The Match in his legacy plans.
And now that he’s feeling healthier, he’s giving the gift of time too—through the Be The Match Peer Connect program. “I had two connections through Peer Connect who really helped motivate and reassure me. I want to do the same for other patients.”
To learn more about including Be The Match in your estate plans, please contact Be The Match Foundation.
