"I need you to just be there. I need you to hold my story."
Andrew Kaczynski on grieving publicly on social media — and his ongoing work to raise awareness about childhood cancer.
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I knew about Andrew Kaczynski before I worked with him. I was immediately fascinated by his ability to take the old fashioned skills of archival digging and harness the power of the internet to pioneer a 21st century hybrid of opposition-style research and political reporting. He seemed to innately understand how ideas and narratives spread on social platforms. He also had an obsessiveness that, in 2011, distinguished him from other online journalists. We overlapped for three years or so at BuzzFeed, where we have always been friendly, though not particularly close.
In September 2020, I watched from afar as Andrew and his wife, Rachel, announced that their infant daughter, Francesca was diagnosed with an atypical teratoid rhabdoid tumor in her brain. Via his Twitter account, Andrew shared the experience during her treatment and after her death on December 24, 2020. Since her passing, Andrew and his family have devoted substantial time and efforts raising money and awareness for childhood cancer, through their Team Beans fund, which you can find (and donate to) here.
Like so many, I’ve been heartbroken and moved by Andrew’s experience. I’ve also been struck by his openness and vulnerability sharing his family’s story on social media. I asked Andrew if he’d speak with me about his experience sharing his grief publicly and the ways in which the internet played a role in it all. What follows is difficult to read. It is also a candid look into the experience of processing grief and trauma. Perhaps it is applicable to you or somebody you know. Personally, I am honored to be able to publish this exchange and to — in Andrew’s words — ‘hold his family’s story,’ in some small way, for a moment.
When did you make the decision to share your family’s experience publicly on social media? You’re somebody who really understands how these platforms work, and I imagine that it must’ve been frightening to be so vulnerable on them. How did you come to that decision?
We found out Francesca had a brain tumor on September 6, 2020. 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.
We found at the ER that she had a brain tumor, and we were basically discharged. Then we went in on Saturday night/Sunday morning for the first emergency surgery to save her life from the tumor. She had a second one the next day where they installed permanent hardware to help with the fluid in her brain. We got discharged by Wednesday and on Friday we got pathology report and found out it was ATRT. ATRT in infants under one year old is nearly always fatal. So that’s what we were dealing with.
Before Francesca got sick, I’d never shared a single photo publicly of her on social media or anywhere. Because of my job, I’ve gotten death threats from all kinds of horrible people. Once we had to flee our home. I didn’t want any of those people to know we had a kid.
But when she got sick, and we got the pathology report, we didn’t know what to fucking do. I basically put that first tweet about Francesca out there because I didn’t know what to do. I needed help. I needed help from anyone. It was an act of desperation, I’ll be honest. At that point, we’d only talked to one doctor — the one who diagnosed us — about treatment, and they’re telling you that your kid will be in hospital for months and on a feeding tube. When he gave us the diagnosis I dropped the phone and threw up and my wife had to take over the call.
The outpouring of support was something I never in a million years would’ve suspected. People started offering to help, other people began calling and texting. Maybe it’s because my experiences with the internet before that moment were never very positive, but I was shocked. That first tweet got like 200,000 likes or something.
I decided to go public because I needed help. So many parents of kids who also had ATRT saw my tweet and reached out and we spoke to some on the phone. By the end of the day we had a game plan with hospitals and which doctors to reach out to. We had to learn everything we could about this disease because when you get it you’re up against the clock. A week later we were in Boston for treatment.
Do you think, after years of being really engaged on places like Twitter, that the decision to go to Twitter was almost reflexive? I know, in my own life, I feel almost conditioned to head to those platforms when I’m trying to think through things or process emotions…it’s really become a reflex for me. Did you feel that at all?
I didn’t know where to turn for help and my reflex said, ‘the best thing I can do is crowdsource this.’ I thought there might be somebody out there who knows about an experimental treatment that’s working in, like, Germany or something. Or maybe there’s a clinical trial that is going on that somebody knows and if I put it out there they’ll tell me I need to look at it. That’s why I did it.
It sounds like your initial decision to be public about Francesca’s illness was more logistical and it worked to get information and good care quickly. Once you were in Boston, what made you continue documenting the experience publicly?
People wanted to keep sending us stuff — food and stuff but we didn’t need it. Kyle [Andrew’s CNN colleague] started a GoFundMe and we had to shut it down because it raised $100,000 in 70 minutes. I was so grateful. The costs of childhood cancer — besides the cost of treatment, which if you have good insurance it can cover a lot — there are so many hidden costs, like traveling and living someplace for care or having to leave your job. It is wildly expensive and we were so grateful. So we started sharing more because we wanted to give people who’d helped us some updates.
But if you go back and look at my tweets about Francesca’s life story and treatment you’ll see I didn’t start sharing the harsh reality of everything until her second chemotherapy cycle. There’s sort of a positivity in the world of childhood cancer community that can be somewhat toxic. Personally, I didn’t want to let people know the terrible stuff that was happening in real-time. And I wish I had. It’s important for people to know what this horrible process is like so that we can push for change.
So you weren’t sharing with people then? Or were you just choosing not to share the more difficult parts of the experience?
In Boston, the shunt they put in her brain in New York City got infected and she had a fever. The second we drove up to Boston we took her to Boston Children’s Hospital and we found out she had meningitis, which required an emergency surgery at 3 AM. This would delay her starting chemo, which was the only thing that would save her life. We had to make risky decision to do tumor resection surgery. That’s the first thing that happened and it was all so bad and I didn’t share it with people. I was afraid to. It sounds weird but I was almost afraid to disappoint people. Stuff was going so bad with us. When we did make decision to go forward with the surgery, it was such a success and I was so happy that I shared an update.
We moved out of the ICU to the oncology floor, and the night we got there, Francesca started having seizures. We had to go right back to the ICU. After I had shared the note about her initial surgery, I was afraid to tell people about what had happened. I felt that, if I shared this, I was admitting that possibly Francesca could possibly die or, worse, that she was going to die. I didn’t want to disappoint people but I also didn’t want to make it that much more real.
I think the time I started getting real sharing her condition was when I witnessed the complete horror of how bad the chemotherapy cycles are. It gets so terrible for kids, man. They get sicker than you or I have ever been in our lives but it’s the only way to cure them. I couldn’t take it anymore; I couldn’t let people not know. I needed support. I needed prayers. And I felt like I had to do it. I don’t know if it made me feel good, but it made me feel like I was doing something by not just holding it all in. It was therapeutic for me to let people know the true nature of this terrible disease.
It’s hard for me to imagine you thinking you were disappointing people by sharing the awful, horrible reality of your situation, but it also makes total sense. Social media creates this strange relationship between you and an audience. It makes people feel they have to perform or at least live up to some specific, impossible kind of image or expectation. It’s awful you felt that way but it is totally understandable that you felt you had to give them a specific type of window into your life. When did you stop feeling like you had to do that?
The last month of Francesca’s life, I finally let people in. There is no silver lining to your child being on a ventilator in the ICU slowly dying. There’s no positive spin to put on it. It was so terrible and horrible and, I don’t know, I find that when I feel the most horrible grief and consuming sadness I want to share about it. Especially now. I find it therapeutic to share with the world how I’m doing.
With childhood cancer, I’ve found that people want to put it in a box and set it to the side. It’s so horrible that we don’t really want to discuss it. People say, ‘this is something unspeakably bad that happened to somebody but it can’t happen to me.’
The reality is that childhood brain cancer is completely random. It can happen to anyone. I feel like the only way there will be action to prevent this is if people know about it. It’s a big part of the sharing for me. We’ve raised so much money for the infant brain tumor center at Dana Farber — over $1 million. But that money will fund at most like one clinical trial. And that trial might not work. It’s important either way but it’ll never be enough for me. I’ll always keep sharing this because it won’t be enough for me until kids stop dying.
Anyone following your posts could see the immense outpouring of public support you got online. I’m curious what it was like behind the scenes. What kinds of private conversations did this inspire online?
The only people I’ve found who’ve truly understood our situation are the other parents who’ve lost children. In terms of empathy, I mean. It’s weird how, when somebody reaches out, you can kind of tell if somebody has had something truly terrible and scarring happen to them. You can tell it by the way they reach out. The only deep fulfillment I get comes from talking to those other parents because they knew the struggle. They know its emotionally draining and they have terrible PTSD from the death of their kids. They’ve felt the acute stress of waiting on every MRI to see if the tumor growing back or if the chemo working. Those things.
There’s an honesty, too. I remember chatting with one parent who’d lost their kid and I asked, ‘hey, does it ever get better?’ and them saying, ‘No, not really.’ There’s something there — just knowing that other people are in that struggle. And now some of those parents are the people we speak to the most now, outside outside of close friends. We went to D.C. recently and didn’t even see most of our friends, we just met with these people who we talk to all the time who are in this fight.
I don’t have an experience that’s remotely comparable, but I know that anytime I’m talking about something that’s personally traumatic with somebody who has been through a similar situation, it is like, an almost energizing, relieving experience. It’s like, ‘ah, here’s somebody who can put language to my internal life.’ You have a shared language there that makes you feel less alone.
Exactly. You have the same language. When I tell someone — a fellow cancer parent — something positive going on in my life they’ll say, ‘that’s awesome!’ And they mean it. But the next thing they’ll say is, ‘but how are you feeling?’ And it’s so important to hear because even when good things are happening with Francesca’s fund or in our lives, there are so many difficult emotions that come along with the good ones. The other parents get that.
I wanted to ask a bit about how you interact with those who reach out online and mean well but also don’t have that shared language or lived understanding of your situation. How do you navigate it all? It must be difficult and full of conflicting emotions.
So many people have a desire to help or fix the situation in some way. But they cannot fix it. So, in response to posts, my feeling was and still is: I need you to just be there. I need you to hold my story. Just doing that will help me.
Just hold my story. That’s such a powerful and affecting notion. I imagine that response doesn’t come naturally to people and that you get a lot of excessive positivity, no?
I want to preface that I have no ill will toward anyone who reached out and that I have the greatest appreciation for all of it. But there are elements of that toxic positivity around childhood cancer. When Francseca was sick and I was sharing updates there were people who’d say, ‘she’s going to get thru this. She’ll pull through.’ And that can be so isolating for people with cancer kids, because the statistics are so fucking grim. When your kid gets diagnosed you have to say, it’s likely my child will die. And listen, I was caught up in this too early on — staying so positive. But it can be isolating when people say it, because you know the real truth, which is that she might not make it. It’s so very hard to hear that. It just makes you feel like you’re on an island by yourself. It’s just you and the cancer parents who know the true reality.
Social media adds an extra element to it, too. Even people who are completely earnest in their support might also feel pressure to perform their sympathies a certain way publicly. Other times, I imagine you have people who are sharing condolences in a certain way that is partly for you and your family but is also for them. And they’re trying to do the right thing and to be encouraging but what you went through is a terrible situation — there were no good outcomes. I think it’s so tricky and fraught to express and to receive publicly. What was that like for you?
Yes. But also there were so many random, kind messages that moved me so deeply. Almost all from people I don’t know. We’ve raised $1,050,000 in our fund as of today with an average donation of $74. That’s so many people honoring Francesca. I don’t know most of those people. I wouldn’t say I thought Twitter was a dark place before, necessarily, but I never really knew the positive power of social media until this.
A small pharmacy in PA raised $2,000 in donations, which was amazing. Many of the nicest messages were from complete and total strangers. I’m looking at my request folder on Twitter and there’s a guy just now who wrote, ‘Just donated to your fund and am thinking of you from UK.’ I don’t know what to say it just really gets me.
I don’t want to dwell too much on the awful reactions and trolls who’ve come after you but it is a part of your experience. How do you handle that kind of harassment at a moment where you’re already so vulnerable and grieving?
In my work [as a political journalist] I’ve had to get good at ignoring trolls. But this was a bit new. People saying your daughter’s death is karma for working at CNN or whatever hurt me a lot more than it should have in the beginning. But there’s just no need for me to give those people oxygen. I’ve received hundreds of thousands of wonderful messages and there is just zero reason to highlight the .00001 percent of people who are horrible. At first it was a matter of self control. I wanted to call these people out. But I’ve realized there’s no need. They are sad people who need help.
Is that a lesson you’ve applied to social media broadly?
People say ‘don’t feed the trolls’ and it’s true. I remember, back in the day, when people would say awful stuff to me on Twitter or spread lies about me and I would block them. But even blocking them is acknowledging these people. They see a block as a badge of honor. I had 3,000 accounts blocked and I ended up recently unblocking all of them. Don’t feed them anything. Don’t even acknowledge them.
Since Francesca passed away I’ve seen that you’ll occasionally post a photo of her or a memory of her, often with an honest confession about how you’re handling the loss in that moment. How do you decide when to post something like that and share your grieving process publicly versus having a more private moment?
It is mostly just natural. I want the world to know — I don’t want to hide from things. The hardest moments I have are the moments where I want to write a post about childhood cancer on the Team Beans Facebook page. I shared a tweet recently showing Francesca and she’s holding her saline tube as a toy — we had to give her a massive amount of saline when she had seizures. I felt such an emotional sadness in that moment and I wanted to share that. Those moments of intense grief is when I’ll share them and it’s the most real. Sharing positive news about the fund raising some amount of money is fantastic. But, like, the real experience of losing a child to cancer is those other moments.
And it’s important for others to know that. When your child gets cancer and dies of cancer your life is never ever, ever, ever the same. Even if you have more kids there’s a sadness to everything that is just one layer under the surface. Since it happened I’ve never felt a feeling of visceral happiness and I don’t think I will again. I’ve had positive news and it’s accompanied by some really good feeling and then just a massive guilt that I’m feeling that way and that Francesca is gone, which is followed by sadness. Any feeling of happiness has this sorrow below the surface. Something great happened and Francesca is not going to see it. We bought this home and it is where she was supposed to grow up.
Those online parent support circles must be a life line then. Like, it’s crushing to know how deep the pain goes but is it also validating to know you’re not alone?
I’m a member of all these Facebook groups and all the parents are — it’s a struggle for them if it happened three years ago or five years ago or ten. Everyone’s posts read the same. The Same struggles. The same feelings. It doesn’t get any easier with time. It’s weird. It’s a weird feeling. It’s a pain that never goes away.
I share these things because I want there to be some sort of change. It was my family in September but maybe it’ll be somebody else’s family tomorrow. It’s random. Sometimes sharing difficult stories is painful but those raw and real stories are important and there’s an undertone of, ‘can we do something, anything to treat this with some fucking urgency, here?’ Five thousand kids will die of cancer a year and we need to treat this as a priority. There are so few people sticking up for these kids — there’s no profits for pharmaceutical companies in childhood cancer drugs and the research doesn’t get done. The government has to step up. I have to step up. It drives me. There’s not enough being done.
You said your experience sharing Francesca and your family’s story on social media has been, at times, therapeutic. This is a broad question, but how do you feel about the role of social media when it comes to processing grief and trauma?
There isn’t a right or a wrong way to grieve. If you get some feeling of help sharing on social media you should do it as much as you want or need to. But part of why I still do it is that advocacy is my way to keep being a father to Francesca even though she died. She’s gone but it still feels like I’m being a dad to her by doing this work in her memory. There’s a weird selfishness to it, in a way. I’m doing this advocacy because she died. You’d do anything for your kid. But there’s no right or wrong way. If sharing publicly is what helps you you ought to do it a lot. There are people out there you’ll meet who will help you.
One of the ATRT families we’re close to, we’ve me them only once. They have a little boy — he was diagnosed before Francesca and they went to Boston for treatment. They leant us their grandparents house for vacation. We text with these people every day. These people are our closest friends and we met them through the internet the day I sent that first tweet about Francesca. It’s been so helpful for me — the power of the internet. And that’s why I have a duty to keep talking about this. I have a platform from my job. So many people don’t.
If people reading this want to help, too, what can they do?
Unfortunately, the sad part, at least with childhood cancer, is that we need to take incremental approaches to cures. I wrote this Washington Post op-ed on that. For a lot of these things the answer is to contact your representative and tell them to support childhood cancer and to increase funding because government funding and private donations are the only way this gets paid for. But there’s so much you can do in every day life. If you’re at the checkout counter and you can give a dollar to childhood cancer, do it. Make sure your legislatures know this is an issue. That children are dying and it is unacceptable. If you can, raise awareness by buying a t-shirt or wearing yellow for childhood cancer awareness month. And if you know somebody who is going through this — a child or a parent — reaching out and saying ‘I’m here’ is something you can do. Just feeling seen means a whole lot.
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Andrew, if you're reading comments, so sorry for your loss.
We lost a child in 2019, and so many people have been sharing their stories of loss with us. One man -- the husband of a friend -- told us how when he lost a child maybe 25 years ago, all their friends turned away from them: most likely because they didn't know what to say and didn't want to say the wrong thing. I kind of think your public openness about your loss is really helpful with this. You might still have to let each friend and relative cry with you in person, but by your being publicly open about grieving, maybe they're less scared of creating a fresh wound.
Moving piece. Our prayers to you Andrew and your family. Charlie don’t know if you remember that my sister, your Aunt died from a brain tumor at 14. Of course, back in the 70’s it took Mom and Dad years to understand what was killing her. And then of course, you lost your dear friend Peter Wise. Born one week apart Peter was only 4. Death is so difficult but losing children leaves the longest lasting scars. As Joe Biden had shared, over time the tears will turn to smiles when you remember them. God Bless