Taking Action After Tragedy
- CNN reporter Andrew Kaczynski and Wall Street Journal reporter Rachel Louise Ensign were heartbroken when they lost their baby Francesca to a rare brain cancer at just 9-months-old.
- Since their loss, the couple have dedicated themselves to raising funds for rare disease research and for families who need help covering the costs of cancer care for their children.
- They established the Infant Brain Tumor Fund at Dana-Farber, and went on to raise over $1.8 million for pediatric brain tumor research.
In September 2020, the couple's baby Francesca was diagnosed with an atypical teratoid rhabdoid tumor (or ATRT). This kind of aggressive tumor is very rare, accounting for only 1 to 2 percent of brain tumors found in children. According to the National Cancer Institute, only 58 people are diagnosed with this condition every year.
Read MoreOn top of that, Kaczynski and Ensign were faced with the challenge of making treatment decisions about a cancer which relatively few people have been treated for. "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," Kaczynski said.
When you or a loved one are battling a rare disease "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." Francesca passed away on Christmas Eve 2020 at just 9-months-old.
Since her death, Kaczynski and Ensign have become committed to fundraising and spreading awareness about rare pediatric diseases. The pair established the Team Beans Infant Brain Tumor Fund at Dana-Farber, named after Francesca's nickname, Beans. They have also raised over $1.8 million for pediatric brain tumor research.
Kaczynski and Ensign are working to address a crucial gap in funding. "Rare diseases in general come last because there’s no profit to be made for pharmaceutical companies," Kaczynski said. "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."
But the couple hasn't stopped there. They are also raising money to support families who cannot cover the medical costs associated with treating a rare disease. "My daughter’s medical care cost $2 million, and she was in treatment for only four months before she died," Kaczynski explained. "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…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."
The journalist urges people to reach out directly to families fighting this kind of diagnosis, and to donate to their GoFundMe pages. He says that it "honestly goes a long way." And even if you don't have the resources to help financially, taking the time to acknowledge the heartache and stress someone else is going through can be an impactful gesture. "Showing people you care often times just means a lot. Sending a nice note or a nice message is something people really remember," he said.
Beans' Cancer Fight
And while the couple is feeling a lot of joy right now, Kaczynski and Ensign were in a much different place just a couple years ago.
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"We found out Francesca had a brain tumor on September 6, 2020,” he said in an interview published to Charlie Warzel's Substack. “That's always going to be the worst day of my entire life. The day she died was not the worst day of my life it was the day she was diagnosed. Everything changed for me that day."
Shortly after receiving his daughter’s diagnosis, Kaczynski publicly shared that Beans was fighting an "extremely rare and very aggressive rhabdoid brain tumor," which is a fast-growing cancerous tumor of the brain and spinal cord.
"Francesca is the strongest person and most resilient person," he previously said in a tweet. "Less than a week ago she had two brain surgeries and she's already at home and smiling. I'm confident she will fight this."
Francesca is the strongest person and most resilient person. Less than a week ago she had two brain surgeries and she’s already at home and smiling. I’m confident she will fight this. pic.twitter.com/i4OJhBmiB0
andrew kaczynski (@KFILE) September 12, 2020
Unfortunately, Francesca developed a serious fungal infection as a result of her chemotherapy, and was put on a ventilator and life support. She passed away on Christmas Eve 2020 at just 9 months old.
"We're heartbroken to have to announce our beautiful daughter Francesca passed away last night in the arms of her mom and dad," the grieving father wrote on Twitter. "There will always be a Bean-sized hole in our hearts for her. We're so grateful to have known her love. Francesca we love you."
Symptoms of Childhood Brain Cancer
Brain and spinal cord cancers are the second most common form of childhood cancer, accounting for more than 4,000 diagnoses per year about a quarter of all childhood cases. Only leukemia is more common.
According to the Mayo Clinic, treatment depends greatly on the type, size and location of the pediatric brain tumor but may include surgery, traditional radiation therapy, proton beam therapy, radiosurgery, chemotherapy and targeted drug therapy.
Some of the more common symptoms of a brain tumor in children include:
- Headaches, which may become more frequent and more severe
- Feeling of increased pressure in the head
- Unexplained nausea or vomiting
- Abrupt onset of vision problems, such double vision
Other possible signs and symptoms, depending on the tumor location, include:
- A fuller soft spot (fontanel) on the skull in babies
- Seizures, especially when there’s no history of seizures
- Abnormal eye movement
- Slurred speech
- Trouble swallowing
- Loss of appetite; or in babies, difficulty feeding
- Difficulty with balance
- Trouble walking
- Weakness or loss of sensation in an arm or a leg
- Weakness or drooping on one side on the face
- Confusion, irritability
- Memory problems
- Personality or behavior changes
- Hearing problems
Losing a Loved One to Cancer
Grief is an inevitable and essential part of the healing process after losing a loved one to cancer. And there's definitely no one way to cope, but Doug Wendt shared his thoughts on grief in a previous interview with SurvivorNet after losing his wife Alice to ovarian cancer.
"We're never gonna move on, I don't even think I want to move on, but I do want to move forward," Wendt said. "That's an important distinction, and I encourage anybody who goes through this journey as a caregiver and then has to face loss, to think very carefully about how to move forward."
Everyone's journey of grief looks different, but therapy and support groups can also be wonderful options to explore. It's also important to keep in mind that time does not heal everything, but it certainly helps.
In an earlier interview with SurvivorNet, Camila Legaspi shared her own advice on grief after her mother died of breast cancer. For her, therapy made all the difference.
"Therapy Saved My Life": After Losing A Loved One, Don't Be Afraid To Ask For Help
"Therapy saved my life," Legaspi said. "I was dealing with some really intense anxiety and depression at that point. It just changed my life, because I was so drained by all the negativity that was going on. Going to a therapist helped me realize that there was still so much out there for me, that I still had my family, that I still had my siblings."
Legaspi also wanted to remind people that even though it can be an incredibly difficult experience to process, things will get better.
"When you lose someone, it's really, really, really hard," Legaspi said. "I'm so happy that I talked to my therapist. Keep your chin up, and it's going to be OK. No matter what happens, it's going to be OK."
Contributing: Abigail Seaberg
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