On Jan. 1, 2022, Carolyn Kuehnel penned a letter that she had been wanting to write for a while.
“Dear Cancer,” she wrote. “You took my baby boy’s health, his energy, his ability to eat and his comfort. You were aggressive, unpredictable and terrifying. You took my family time, my holidays, my rest and my sense of safety. You were powerful, but we were stronger.
“You can take my time. You can take my money. You can take my energy, my sleep and my peace, but you cannot have my baby.”
Her baby Freddie, who was diagnosed with the rare cancer juvenile myelomonocytic leukemia (JMML) at 10 months old, is still securely hers. Freddie is 2.5 years old now, and, thanks to the care he received at Mass General for Children (MGfC), is now cancer-free.
To help children like Freddie who are facing their own illnesses, Carolyn is running in April’s Boston Marathon® to raise funds for pediatric cancer research at MGfC.
“When I first thought about running the marathon for MGfC, I didn’t know if it would be in his memory or because he made it,” says Carolyn, a psychologist in Franklin, Mass. “To know that I’m doing this race not even two years out from his diagnosis, to see my three boys watching, to know that I’m raising money for doctors who save kids from cancer — it’s not uncommon for me to start crying while I’m out there running.”
A Rare and Frightening Diagnosis
Carolyn and her husband Paul, who met on the high school track team, have three sons who are each 19 months apart. Carolyn ran her first Boston Marathon before the boys were born, crossing an item off her bucket list in 2016 and calling it “the perfect experience” — so much so that she didn’t plan to repeat it.
Fast forward five years and three babies later, and Carolyn and Paul were trying to figure out why 10-month-old Freddie wasn’t eating. When he did, he vomited. Every test for typical childhood viruses came back negative. After one appointment, when Carolyn saw how lethargic Freddie was, she knew something was wrong. The couple took him straight to Newton-Wellesley Hospital, where Freddie was quickly transferred into an ambulance to MGfC and admitted to the hematology and oncology unit.
“Running was what allowed me to feel again. That’s what got me thinking about the race. You don’t process trauma when you’re going through it — you just survive. Now, we’re able to feel those emotions again.”
Freddie’s JMML diagnosis came back three days later on April 15, 2021, based on the results of his bone marrow biopsy. Knowing that a stem cell transplant was the only cure, Mary Huang, MD, immediately started Freddie on chemotherapy to lower his cancer levels enough that he could be ready for the transplant. Carolyn and Paul tested themselves and their older sons to see if anyone was a match for transplant; while their two boys were a perfect match for each other, no one in the family was a match for Freddie. The team at Mass General worked closely with doctors at Boston Children’s Hospital, the Dana-Farber Cancer Institute and The Jimmy Fund to comb the bone marrow donor registry and find a perfect match. Thanks to an anonymous donor, they did.
“The care we had was unmatched,” Carolyn says. “We got to know Freddie’s team so well. They took the time to answer every single question we had and explain every part of his treatment to us, from the geneticist telling us what the team was looking for to Dr. Huang walking us through the chemo and its side effects. The nurses were incredible. Everyone gave us such a good understanding of what he was going through, which we really needed.”
A Soundtrack for Long Days, and Runs
Other touches eased the long days in the hospital, like a cup of iced coffee and a pair of socks when a nurse knew Carolyn had been holding an uncomfortable Freddie all night long so he could sleep. Pediatric music therapist Adam Sankowski made a point of learning songs by Leon Bridges, Freddie’s favorite artist, and the nurses played Bridges’ music whenever they transported Freddie to and from treatment.
“Music has become such a part of our lives. It gave us something to lean on,” Carolyn says. “People went above and beyond to get to know him. They knew what we needed without us asking, and they took care of us every time.”
Freddie had a successful stem cell transplant on Aug. 4, 2021. To protect his weakened immune system after the transplant, Carolyn and Paul pulled all three kids from daycare for the next six months. One parent stayed home one day and schooled the boys while the other worked; the next day, they switched. To clear her mind, Carolyn spent her precious free time on the treadmill.
“Running was what allowed me to feel again,” Carolyn says. “That’s what got me thinking about the race. You don’t process trauma when you’re going through it — you just survive. Now, we’re able to feel those emotions again.”
A Family of Superheroes
When Carolyn and Paul tested their older sons to see if they were a donor match for Freddie, they used a superhero analogy: there was bad stuff in Freddie’s body, and they needed to find some superpowers to help. Now, the boys know they might pass their superpowers to someone else when they’re older, and Freddie runs around the house shouting, “I’m a superhero!”
“You would never know how sick this kid was. We thought we were going to lose him,” Carolyn says. “If we were somewhere else, we could have. He was so sick with a rare form of cancer, and they caught it and started him right away on a treatment that worked. I can’t put words to how grateful we are.”
To support Carolyn’s fundraising efforts for MGfC, click here.
To learn more about Mass General’s marathon team, click here.
John Hancock-Mass General Boston Marathon® Partnership
Mass General is proud to be an official Partner of John Hancock in the Marathon Non-Profit Program. The Non-Profit Program provides more than 1,000 Boston Marathon® bibs to select non-profit organizations throughout the community, giving an opportunity to all to raise significant funds to advance their missions.
For 26 years, John Hancock has been our steadfast partner in the Marathon Non-Profit Program and with their support, we have raised more than $22 million for Mass General. We are deeply humbled and profoundly grateful for their longstanding dedication to our mission. Their trust in us helped us reach this pivotal moment in medicine, a moment that allows us now to reimagine the future of health care for all people, both locally and around the globe. Learn more about our John Hancock-Mass General Boston Marathon partnership that continues to provide significant support for our three signature causes: Pediatric Cancer, Emergency Medicine and Home Base.