What ‘Beans’ taught her parents about pediatric cancer, the need for research, and patient advocacy

On what should have been Francesca Kaczynski’s first birthday, her memory was celebrated instead on national television. The ebullient baby girl, “Beans,” as she was fondly called, had died on Christmas Eve from brain cancer. And her parents, both well-known journalists, are now raising awareness and money to help other children with pediatric cancers.

When Francesca was just six months old, she was diagnosed with atypical teratoid rhabdoid tumor — a rare and brutal brain cancer that is diagnosed in maybe 60 people each year. The prognosis is devastating when it appears in infants. There are few effective treatment options.

That’s a problem that applies across many childhood cancers, particularly those of the brain. Pediatric oncologists and neurosurgeons spend much of their research time scrounging around for funding to develop new treatments, and often come up short. Few drug makers have a financial incentive to pursue tailored treatments for these children.

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Francesca’s parents, CNN investigative reporter Andrew Kaczynski and his wife, Wall Street Journal finance reporter Rachel Louise Ensign, want to change that. They’ve so far raised nearly $750,000 through their charity work, which they’ve dubbed “Team Beans” in their daughter’s honor. Among other efforts, they are advocating for legislation that would funnel money into research and possibly change the course of pediatric cancers.

STAT spoke with Andrew Kaczynski at length about his family’s devastating journey — and what he believes must be done to help others dealing with pediatric cancer. This interview has been edited for length and clarity.

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How did Francesca first get diagnosed?

I think it was over Labor Day weekend. And that was the day that the perfect life that my wife and I had with our six-month-old baby was really shattered forever. Looking back, I wish I could say that Sept. 6 was the worst day of my life — but when your kid has cancer, literally every day is the worst day of your life.

But that day was like any other day for us. We were walking around Brooklyn. It was a great, sunny, beautiful day. But then she got sick in the evening, and she was vomiting, and she wouldn’t stop, and was looking very lethargic — her eyes weren’t very focused, they were wandering around. We knew something was very wrong.

We took her to pediatric urgent care, and they said it was probably a stomach bug, and would pass. But when we got home, it just did not seem right at all. We took her to the ER. And the second we got there, the ER physician told us, “Your daughter’s head is way too big right now. And the way her eyes are looking — we need to do a CT scan right now.”

We thought he was crazy, that she just had a big head. Francesca was a big baby when she was born. But they took her in, and they did a CT scan, and the doctor told us that she had a mass in her head — it was a brain tumor, they said, and it was probably cancer.

The second she was diagnosed, I was just walking around the ER asking myself “Why my baby? Why? Why? Why?” There is no why. There will never be a why.

And obviously, our lives were shattered from that point forward.

Did you have to treat her immediately?

We had to go straight to the city, and she needed emergency surgery because she had hydrocephalus [a buildup of fluid in the cavities of the brain]. It was the first of many surgeries. From there, we confirmed that it was cancer. We got the pathology report back that Friday, then had surgery again the following Sunday, then the Friday after that, found out that she had ATRT. Which is one of the worst types of tumors.

It was obviously terrible. I threw up when I found out. I was just crying, holding Francesca, telling her how sorry I was.

You wrote in a Washington Post essay that this kick-started, for you and your wife, the “worst reporting project ever.”

A lot of what I do in my job as a journalist is just research — so I was doing hour-long calls with parents of kids with ATRT, learning about their experience, finding out how to navigate the health care system. We spoke to them around the clock, and by that Thursday we had decided to take her to Boston for treatment.

You said you were running on adrenaline, researching everything you possibly could, while caring for a sick baby. Your wife is a journalist as well. What was her approach?

She was on exactly the same frequency as me; making the same calls, doing the same research. I think that one thing that made this experience a little bit easier: My wife and I have been on the same wavelength every single day. It made it much easier for us, as a couple.

What was Francesca’s prognosis?

There’s a treatment protocol, which was developed by our physician at Dana-Farber, that has changed the odds for ATRT. Before this protocol, it was a situation where all kids with ATRT die. Now, it’s a bit fragmented: If your kid is under 1, they have a less than 10% chance of survival over five years. If your child is above 3, the numbers are a lot better: There’s a 50% to 70% chance of survival. It’s partly because if you’re over a certain age, you can get radiation — babies under 1 can’t.

In addition to the surgeries to remove the tumor and the excess fluid, Francesca was given chemotherapy. What did that look like?

The treatment is harsh. Really harsh. You’re giving these kids chemotherapy to the point that it’s just below the toxicity threshold. And I mean, you watch your kid suffer a lot. It’s just terrible. The kids are sicker than you and I have ever been in our lives. In horrible shape. The memories of just those chemo cycles are just — it’s really, especially when she died, it’s really traumatic for me.

These are children that did not deserve to suffer anything. They didn’t do anything to anyone, and here they are to suffer chemotherapy at the highest dose because it’s the only shot to save their lives.

The treatment destroys their immune system, and they have to stay at the hospital. And with Francesca, after the third cycle of chemo she got a fungal infection, and she had no immune system to fight it off. You and I can’t even get an infection like that, because our immune systems will fight it off. With her, she got a fungal infection, and her body couldn’t fight it off. Ultimately, that’s what killed her.

It was a really, really terrible few weeks, watching her in the ICU. She went into septic shock when we were on the oncology floor, and we had to rush into the ICU to put her on a ventilator — but then she struggled for a month until she died.

It’s hard for me. It’s hard because her tumor and the metastatic disease were actually responding really well to the treatment. She was doing great. Given the extent of the disease she had, in terms of the reduction of the tumor, she was doing great.

So it’s really hard for me that she died, knowing how she was doing. But you can’t separate the treatment from how she responded to it. You can’t separate the reduction of the tumor from the potential complications of the treatment. You have to take it all together. It’s obviously a risk, but it was her only chance.

How do you move forward from here?

I think that last month in the ICU is what motivates me to become an activist for pediatric cancer funding and legislation. People need to know that kids get cancer, and kids get brain cancer, and people need to know that a lot of these kids die from it.

You might see ads on TV, where you see a smiling kid who’s bald, and people think pediatric cancer is no longer a problem. But it’s a big, big problem. And Francesca’s experience is what motivates me — to make sure that we can do everything we can.

I can use my position to advocate. When Francesca died, the amount of money we raised — the outpouring of support was so overwhelming. We’ve raised almost $750,000 so far. But it’s also about raising awareness and pushing for legislation that’s actually going to help.

I know the Biden administration has created HARPA [the Health Advanced Research Projects Agency] to help look for cures to diseases. I will push to make sure pediatric cancer is a big element of that. I’d like to help educate people about legislation that’s already out there to help pediatric cancer.

What legislation are you referring to, in particular?

There’s a bill coming up — the Gabriella Miller 2.0 Act. A lot of patient advocacy organizations are founded by bereaved parents who lost kids to cancer, and now want to do everything they can to help. Gabriella Miller was a very great activist, and raised a lot of money and awareness for pediatric cancer even while she was dying of an aggressive brain tumor. She died when she was 10. But her family founded an organization after she died, and they helped pass a bill called the Gabriella Miller Act, which was pushed forward by Eric Cantor and President Obama. They took money from the presidential campaign fund at the time, and put it into a fund for pediatric cancer and rare disease at the NIH.

Now, there’s another bipartisan bill they’re working on. It’ll take penalties from pharma companies, herbal medicine companies, medical device companies, and cosmetic companies. It’ll take those penalties, and put them in a fund for pediatric cancer research. That’s real money that’s going to go to the kids, and my whole thing is just push from one thing to the next thing, and to never let up.

So what do you see as the best approach in tackling rare pediatric cancers? Is it directly funding research, is it promoting legislation, or is it finding ways to financially incentivize pharmaceutical companies to take on these indications?

One thing I’ve learned: There’s no one-size-fits-all solution to pediatric cancer. You have to keep coming at it, like hammering a nail into a wall. Getting legislation passed is a really big part of that, but fundraising is as well. Because in terms of money, pharmaceutical companies will never, ever be incentivized to come up with a drug for pediatric brain cancer, because there’s no profit there. The amount of kids getting it is too small.

So the best use of this money is to fund all sorts of different things. Backing young researchers who want to look into ATRT. Backing clinical trials of adult cancer drugs to see if they might have some use in pediatrics. With our money, we’re giving it to our physician, Dr. Susan Chi, at Dana-Farber. She came up with the treatment for ATRT. This is someone who decided to devote her life to help children with a cancer that’s so rare — and basically, I just trust her.

She’s running clinical trials and trying new things. For me, helping the people on the cutting edge of this research, and funding people who want to get involved in it, is super, super important.

Research is showing that the genetic mutations driving pediatric brain tumors can be linked to other forms of adult cancer. For instance, ATRT is triggered by a mutation in the SMARCB1 gene, which has also been implicated in some kidney and cervical cancers. Couldn’t you use this information to appeal to pharma companies to take on pediatric brain cancers?

Honestly, that’s one of the hardest things I’ve learned in all of this. It’s super difficult to incentivize people who don’t necessarily see an economic value in helping your child. With so many of the advocates that I’ve been speaking to, this is the biggest problem. And I feel like there hasn’t been a good solution — so you end up funneling your money into research that’s more targeted toward adult cancers instead.

These numbers might not be accurate, but they’re close enough. The average kid with cancer loses about 70 years of life. Francesca lost 70 years of life she didn’t get to live. Globally, that’s millions of years we lose each year when children die of cancer. The numbers may not be there to support a financial incentive to drug companies, but it should at least give the government incentive to fund research. These are children who have done nothing wrong, did nothing to get cancer. If our government isn’t helping fund research and doing as much as it can to help these poor kids, what the hell is the point of the government?

Were there any steps in the process where you felt your family was treated unfairly, or didn’t get the right support?

We didn’t encounter any roadblocks in terms of finding treatments. Our physicians, particularly at Boston Children’s, have been wonderful. The hardest thing in the beginning was getting her medical records: When your child has metastatic ATRT and has a tumor that’s so big that it caused hydrocephalus, and she needed a shunt put in — you don’t have a lot of time to make a decision on what kind of treatment you’ll pursue.

So just the fact that you might be waiting for institutions who give you counsel to receive your medical records — that you have to send them via snail mail when they’re already digitized — honestly, it’s a complete disgrace.

It was so difficult to get our daughter’s MRI images. I had to go to the records room of the first hospital she was treated at, and I could only get the images on a CD. Then, the records department wouldn’t send them to the other doctors who needed them.

So, even though this is the digital age, I ran to FedEx the second I woke up in the morning, and overnighted the CDs to St. Jude’s, Sick Kids in Toronto, to UCSF, and to Boston Children’s. In order to get a digital version of Francesca’s images, I had to get a copy of the CD, buy a CD drive, get the images on my computer, then send them to all the hospitals and experts around the country. Even though I spend all day in front of a computer for my job, this was really difficult.

Any other roadblocks that surprised you?

Just the lack of data around this disease. The thing is, there are only 60 cases of ATRT every year in the U.S. And the top oncologists only see a handful of them — so data is scattered among a number of institutions. It’s difficult to learn more about this disease because of privacy laws. If there were a way for me to opt in, and share our information in some sort of a database, we would have 100% done that.

But there’s no central database for information about ATRT. I would have wanted to know, for example, how many children who had metastatic ATRT diagnosed at six months old, who didn’t have a full tumor resection, lived beyond three months or a year or whatever. And that data was not out there for us. We had to talk to the neurosurgeons, and they each had different approaches. Some didn’t want to do a tumor resection. Some did.

Ultimately, after speaking to everybody, we just had to make a decision on what kind of treatment to do, based on what would give Francesca the best shot.

You’ve become a big part of the patient advocacy community. Tell me more about that.

As a parent, we got some of our best information out of the Facebook private groups for all the ATRT parents. They’re the most knowledgeable when it comes to what clinical trials are underway, and what treatments are available.

I’m a journalist, and it’s my job to learn and understand information, compress it, and synthesize it for my people in a short period of time. So it’s always really interesting for me to see so many of these parents who aren’t journalists just become experts. The intelligence of parents is astounding, when the topic is their kids. People are really smart, you learn. From all walks of life. And people are kind.

Have you found that many parents are like you, continuing the work, even though they lost their kids too? Or do you find that more people tend to step back to grieve?

Everybody’s different. If we wanted to not speak to the world about our daughter’s cancer diagnosis and treatment ever again after she died, that would have been totally OK. There’s no right or wrong way to respond to the death of your child.

When you lose a child, your life is never the same again. Never. Never the same. Never. My wife and I talk about it, and it’s the dividing line in our life. I’m never going to be the same, and none of those people will be, either. When Francesca was diagnosed, and when she died, the outpouring of love and support was something I would have never imagined. I want to help anybody that I can because of what was given to me by other people.

I think a lot of parents strive to be involved, but don’t necessarily know how. I want to help other parents who want to help. I want to help them focus their energies in the most effective ways possible.

So for some people, they use their child’s death to become advocates, because — I don’t know, this experience just changes you. I used to be carefree. Innocent. I thought about kids with cancer as something in the abstract, something rare that happened to other people. But a child dying to me — that will never be an abstract principle. And now, for me, this is the motivating factor for the rest of my life.