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When Andrew Kaczynski begins his run from Hopkinton to Boston on Marathon Monday, he knows he will feel the spirit of his daughter, Francesca, with him.
Boston is where the CNN journalist and his wife, Wall Street Journal reporter Rachel Ensign, moved when their then-6-month-old daughter was diagnosed with an extremely rare and aggressive brain tumor.
They wanted to give her the “best shot” they could at Boston Children’s Hospital.
It was in Boston that Francesca, nicknamed “Bean,” “Beanie,” and “Beans” by her parents, stole the hearts of nurses and doctors alike with her smile. While she was undergoing treatment, her parents took her for walks along the Charles River.
They read her “Make Way for Ducklings” and brought her to see the statue of the Mallard family in the Public Garden.
“She was just so happy,” Kaczynski told Boston.com. “She was just the most smiley baby, and it was hard to find her not smiling.”
Francesca died on Dec. 24, 2020. She was 9 months old.
Since Francesca’s passing, Kaczynski, a senior editor and founding member of CNN’s Kfile, and Ensign have dedicated themselves to raising awareness about pediatric cancer and fundraising to support research in her memory.
Donations flooded in to support their effort, Team Beans, in the days after her death, and since then, the couple has raised more than $1.3 million. The money is being used to establish a new program, the Team Beans Infant Brain Tumor Fund, which will support the Infant Brain Tumor Program at Dana-Farber Cancer Institute.
The couple was fundraising for the Pan-Mass Challenge to support the new program when Kaczynski decided he would run the 2021 Boston Marathon for Team Beans to support Dana-Farber and Boston Children’s Hospital.
For the race, he has gathered the names of other young cancer warriors to wear on the back of his Team Beans T-shirt. Each mile of his race is dedicated to a child with a name on his shirt.
When he put the call out for parents to share their children’s stories with him so he could include them in his run, he got more than 200 submissions.
“I was so overwhelmed with the response,” he said.
In advance of the marathon, Team Beans has raised thousands of dollars selling the shirts, and Kaczynski has been sharing the stories of the young patients with his thousands of followers on Twitter.
“I’m running the marathon not just for Francesca but for all of those other kids,” he said.
Kaczynski said he knows that thinking of the names will help carry him through the race on Monday if it gets tough.
“Francesca died of cancer,” he said. “Every day there’s another kid in the United States who is just like her. There’s another kid, or another parent, or another family who gets the terrible diagnosis, and their life is just shattered forever when that happens. It absolutely is shattered. And not everyone’s story gets to be told the same way Francesca’s was.”
So often, families whose lives have been impacted by childhood cancer just want to be seen, he said.
That’s why he’s sharing as many stories as he can.
“We just want to be seen and acknowledged that we’re real people and our children were real people,” Kaczynski said. “And don’t just push away childhood cancer into this box of something horrible that happened to someone else but won’t happen to me. That’s part why I try to keep it on the forefront.”
If the realities and experiences of families touched by pediatric cancer aren’t shared and advocated for, he said more funding, better legislation, and greater awareness of the illness will be lost.
Because childhood cancer can often make people feel uncomfortable, they look away from it, he said.
“There will be people who want to support you but will say things like, ‘I can’t imagine your pain,’” Kaczynski said. “And to a lot of people who have had a child die, when they hear something like that, what they’re really hearing is, ‘I don’t want to imagine your pain.’ Because when you hear somebody say, ‘I can’t imagine that’ — you are imagining it at that time and it’s so terrible that you don’t want to. People don’t say things like that to be cruel or anything like that. People are trying to empathize with you. But it can also be so isolating. And with something this horrible, you want to push it away and to think of it as something that can’t happen to you.”
But it can happen to anyone, he said. Childhood cancer strikes randomly.
“That’s also part of why I think we need to do so much more, so that if it does happen to you, there are better solutions and cures and treatments,” he said.
Kaczynski stressed that his goal is not just to raise funding. He and Ensign want to raise awareness that childhood cancer is “extremely” underfunded.
“I want people to know that we can’t do this, we can’t find cures unless there’s money,” he said. “And it’s not coming from the private sector, so it’s up to us to step forward.”
Because there are fewer patients diagnosed with pediatric cancer on a yearly basis compared to other types of cancer, there isn’t as much financial incentive for pharmaceutical companies to invest in research and drug development, he said. Meanwhile, only about 4% of the government’s annual funding for cancer research is earmarked for childhood cancer, according to the National Pediatric Cancer Foundation.
That’s why it has become so important for families to fundraise for research, he said.
And it’s why the support that he and Ensign have received mean the world to them.
“The support we get and continue to get, it gives me a lot of hope,” he said. “I’m filled with a lot of hope because advances are being made in treatment. Even though it’s hard because Francesca died, I have some hope too knowing our money is going to help advance those treatments, especially at Dana-Farber, for brain cancer in young children.”
It’s the legacy he wants to build for Francesca, knowing that she didn’t get the chance to create one of her own.
“Francesca was a real person, and she’s always going to be a baby to me,” he said. “Her life definitely mattered, and I want to make sure it matters — that’s part of the legacy I want her to leave, is that she is leaving her fund at Dana-Farber … and can help fund brain tumor research, even if it’s just incremental, to make better outcomes for other kids. That would be such a strong legacy for her to leave behind.”
Kaczynski and Ensign returned to Boston in August, their first visit back since Francesca’s death, to fundraise with the Jimmy Fund Radio-Telethon at Fenway Park. During the trip, Kaczynski went for a run, trekking from Fenway to Jamaica Pond through the Emerald Necklace.
Training for the marathon, Kaczynski said running has been therapeutic for him in his grief. It has helped a lot emotionally, he said.
And even though the Boston Marathon is his first ever race, in the days ahead of the run, the journalist said he’s feeling confident. He always wears a Team Beans T-shirt when he runs.
Whenever it gets tough, he thinks of Francesca and the other names on his back to get through.
It was on the August run through Boston that he felt something different, a glimpse of what he imagines he may experience on his 26.2 mile race on Monday.
“I just felt Francesca’s presence in a very strong way for the first time in a long time,” Kaczynski said. “And it really was such an experience for me to feel that. I could really feel her spirit, and I just know doing the marathon and running by so many of those monuments and areas of Boston that we went with her, I’m really going to feel her spirit. I was getting emotional, and I’m getting emotional just talking about it.”
He knows the run will be tough emotionally but also rewarding.
“This city was so good to us, and we raised so much money,” he said. “And to be able to do something for [Francesca’s] legacy and help bring money to her fund at Dana-Farber means so much to me. We’ve gotten such strong support from so many people in Boston and around the world doing that.”
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