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CNN journalist Andrew Kaczynski and his wife Rachel Louise Ensign, a Wall Street Journal reporter, have faced the unimaginable as parents.
Their baby Francesca, whom they lovingly call Beans, was diagnosed with an “extremely rare and very aggressive rhabdoid brain tumor,” known as an atypical teratoid rhabdoid tumor (or ATRT), in September 2020. ATRT represents only 1 to 2 percent of childhood brain tumors and usually appears by 3 years old, according to the Dana-Farber Cancer Institute.
Their daughter’s “shocking” diagnosis catapulted Kaczynski and Ensign into the world of rare pediatric cancers. “Our daughter was totally fine, totally normal,” Kaczynski tells Yahoo Life. “One day, her eyes weren't focusing and she was vomiting and couldn't stop. So we took her to the ER and they did a scan and they said, ‘There's a mass in your daughter's brain.”
After receiving the devastating diagnosis, Kaczynski and Ensign knew there was no time to waste. “You really just have to jump right into it,” he says, from investigating hospitals that specialize in treating their daughter’s rare pediatric cancer to gathering and sending out medical records and making appointments for consultations — all while knowing the clock is quickly ticking down.
“You have to do this all within a week because… you're dealing with these rare and aggressive brain cancers,” he says. “You have to figure out a treatment plan just because of how quickly these sorts of tumors are growing.”
While caught up in this whirlwind, “you almost don't have time to even process it,” Kaczynski says. “You go from having a perfectly healthy, happy child to having to accept the fact that your child might die.”
Rare diseases often have few treatment options
A rare disease is defined as one that affects fewer than 200,000 people in the U.S. Only 58 people are diagnosed with ATRT — the type of brain cancer Kaczynski’s daughter had — per year in the U.S., according to the National Cancer Institute, “which is not very many and is sort of the perfect example of rare disease,” he says.
Compare that to more common diseases such as breast cancer where “you have 200,000 to 400,000 cases a year in the United States,” he states. “So for a treatment for something like breast cancer, there's a pretty standard protocol that you're going to get at pretty much any hospital or place you're treated.”
For rare diseases, however, “it's very difficult for us to pinpoint the best treatments in something that only affects 40, 50, 60 families in the United States a year,” he says.
Having only a small number of children and adults facing these rare diseases has big consequences. According to a 2019 editorial in the journal The Lancet: “Whether a single rare disease affects thousands or just one person, the impact on the affected individual and those around them can be devastating: 50 percent of rare diseases affect children, 30 percent of whom will die before age 5 years.”
Kaczynski and Ensign’s daughter died on Christmas Eve 2020. She was only 9 months old.
After their daughter’s death, Kaczynski and Ensign dedicated themselves to raising awareness and funds to help fight rare pediatric diseases like the one that took the life of their infant daughter. The couple founded the Team Beans Infant Brain Tumor Fund at Dana-Farber and have raised more than $1.8 million, which will go toward a new infant brain tumor program at Dana-Farber.
Fundraising for treatments is crucial when it comes to drug development for these types of conditions. “Rare diseases in general come last because there's no profit to be made for pharmaceutical companies,” says Kaczynski. “So any research that is coming is coming from investment from private charities [and] the government. It's just sort of a constant fight to even get that funding. So it gets to the issue of just when you get a diagnosis like this, there's not a lot of treatment options.”
Along with a lack of funding for treatments, families coping with pediatric cancers can face daunting financial burdens. “My daughter's medical care cost $2 million, and she was in treatment for only four months before she died,” Kaczynski shares. “It costs millions and millions and millions of dollars just in terms of the medical treatment and that doesn’t involve all of the other things that parents have to deal with, which is the cost of moving for care. We had to pay thousands of dollars for an apartment near the hospital. We had to spend thousands of dollars to rent a car.”
He adds: “It's a huge financial strain. It’s a horrible situation for a lot of families because so many families are just very deep into debt.”
There’s also the steep emotional toll that having a sick child takes on a family. “It totally disrupts your family unit,” Kaczynski says. “You're basically living in a hospital with your child. That requires, a lot of times, one or even both parents taking time off work. You have to do physical therapy. You have to go back to the clinic all the time.”
What people can do to help
Kaczynski, who welcomed a baby girl, Talia, with Ensign in January 2022, encourages people to donate to childhood cancer organizations or a family’s GoFundMe, which, he says, “honestly goes a long way.”
He adds that donating to a place like the Team Beans Infant Brain Tumor Fund, which is a fund of Dana-Farber Cancer Institute, helps finance clinical trials and research.
If you know of a family coping with pediatric cancer, Kaczynski recommends reaching out to them and showing them some support. “Ask how they’re doing and actually mean it,” he says. “Maybe send that family a meal or get them gift cards. Showing people you care often times just means a lot. Sending a nice note or a nice message is something people really remember.”
Video produced by Olivia Schneider.
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