Love, Loss, and Community via Twitter

Team Beans; teambeans.medium.com

Having recently expressed my concern about the negative impact of social media on us as individuals and on our society, I feel moved to show one of the positives that has affected me profoundly.

Probably most non-Twitter users—if they think of Twitter at all—see it as the dreadful megaphone that amplifies Donald Trump’s worst pronouncements. And that’s true.

But I don’t follow Donald Trump, so I’m spared all that. I haven’t been on Twitter for long, and I don’t follow many people or have many followers of my own. But I have noticed that Twitter provides a supportive environment when people report on their illnesses, the death of a loved one, or the rotten day they’re having. They are then comforted by complete strangers who send them kind remarks.

If “the kindness of strangers” is not your thing, I understand. It may seem empty and insincere to some. But in a polarized country living through a pandemic, a comforting tweet seems to mean a whole lot to a great many people.

I find it impossible to read one of these appeals and move on without simply writing a few words of commiseration. Often, the individual will receive thousands of these little tweets—and respond to each of them.

One person captured my heart with a tweet. His openness in describing his situation led me to follow him assiduously and become emotionally invested in his family and their plight.

When I joined Twitter three months ago, Andrew Kaczyński, a CNN political reporter, described his daughter Francesca, who had been diagnosed with a rare and very aggressive brain tumor. I subsequently learned that the cancer, atypical teratoid rhabdoid tumor (ATRT), is most often seen in children younger than three.

At the time, Francesca was six months old. The photo her dad posted (see above) showed a beautiful little girl with huge, warm brown eyes and a captivating smile.

Andrew (I don’t know him but feel as though I do) and his wife, Rachel Ensign, who’s a banking reporter at the Wall Street Journal, moved from their Brooklyn, New York home to Boston. The move was to enable Francesca, known as “Beans,” to be treated at Dana-Farber Cancer Institute’s pediatric oncology unit.

For a while, the reports were positive: this feisty little girl was charming everyone and good-naturedly putting up with all the tests and procedures she had to undergo.

Andrew wrote about his baby’s strength and resilience. “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.”

Last month, Andrew informed us that Francesca was suffering from the results of the chemotherapy. Then she was on a ventilator. He asked his Twitter community for support, expressing his hope for a ”Christmas miracle for our family.” Many thousands responded. He said the outpouring was a great comfort to him and his wife.

On Christmas Day, Andrew wrote the following:

“We’re heartbroken to have to announce our beautiful daughter Francesca passed away last night in the arms of her mom and dad. 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.”

Andrew and his wife composed an obituary to their daughter that appears, with photos, in Medium, which you can access here. Francesca was then only nine months old. He wrote that they tried to “capture her short, wonderful life. She was a bold, curious baby, whose smile lit up rooms.”

The passage that particularly moved me to tears was:

“Her many smiles sent a thrill through the world. She was so generous with them, even when most of the smiles back were covered by masks and even when she faced challenges that would scare an adult, like a cancer diagnosis or being born with hearing loss.”

Now the Twitter community has come together to sponsor a woman named Danielle Pourbaix who is participating in the PMC (Pan-Mass Challenge) Winter Cycle bike-a-thon. All funds in memory of “Baby Francesca” (aka Beans) will go to pediatric oncology and ATRT research at Dana-Farber. The goal is $500,000, and nearly $479,000 has already been raised. That goal will surely be exceeded.

Andrew has said that he and his wife “are going to spend the rest of our lives involved in finding a cure.”

I doubt that I shall ever meet Andrew Kaczynski or Rachel Ensign. But I am grateful to have been a part of the strangely cohesive circle of love that he generated in thousands of us, to have given some support, and to have joined in that vast circle now trying to help him and his wife as we collectively mourn a joyful little girl who endured so much in her brief life but leaves a legacy of hope that others might be spared.

I have now seen up close the power of social media to remove all sorts of artificial barriers and appeal to the best in us, reminding us what’s truly important—compassion for one another—and can easily be shared.

The dangers of social media revealed by some of the remorseful tech designers in the documentary-drama “The Social Dilemma” must be addressed. But I believe the two designers who then founded The Center for Humane Technology are seeking to create just the kind of caring community that evolved through the grace and love that Andrew Kaczynski brought to Twitter through his brave and precious Francesca.

May 2021 be a year of healing for the Kaczynski family–and for our nation.

Annie

28 thoughts on “Love, Loss, and Community via Twitter

    1. Thank you. I know there have been considerable gains. That’s very encouraging. One of the things Francesca’s dad found so hard in all this was how harsh the treatments were. I hope the money raised in her memory will speed the timetable for discovery.

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  1. there aren’t words to do this justice. thanks for letting us know, Annie. definitely social media is a 2-edged sword that we must continually educate ourselves about. wishing you & yours the best for 2021

    Liked by 2 people

  2. This past year of isolation and uncertainty has surely sharpened our need for community. You’re the science writer, Annie, aren’t we pack animals (like dogs)? If used properly Twitter provides that community as your beautiful piece illustrates. So sad, that young girl . . . and I read this on a day when I learned of the death of another in my orbit of brain cancer, so your piece especially strikes a chord. Wishing that family health, healing, and strength. Wishing you and all your readers the same. Happy New Year and may it indeed be a happy new year.

    Liked by 1 person

    1. Oh, my, Denise. So very sorry to hear that sad news.

      And I extend the same wishes to you and yours—and as you’ve so thoughtfully observed—to my readers, whose presence, attention, and insights I treasure.

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  3. Such a sad beautiful story of love. Such a precious baby. Social media definitely has a good side. I’ve always felt that. Even blogs. You can find like minded people of various interests and beliefs that you can form a virtual community with and this helps a lot with loneliness.

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  4. I’ve not been on Twitter all that long (at least it doesn’t feel it to me) either and I agree with what you said about the ‘kindness of strangers’. It can seem a little hollow and insincere when people don’t know each other and yet there’s something quite beautiful about it, especially during these dark days and when both the US and UK seem more polarised than ever.

    I hadn’t known of ATRT affecting such young children either. Andrew Kaczyński has done well to share about his daughter, though I’m so sorry for what Francesca had to go through and for her family. It sounds like she was a wonderful little girl with a beautiful soul, full of pizazz and courage. How painfully sad. I cried when I read what you quoted here from Andrew on Christmas Day. I don’t have the words for just how heartbreaking that is. The world can be so cruel sometimes. On the other hand it’s wonderful to see the efforts of others with the fundraising for paediatric oncology & research into ATRT to hopefully help others in future.

    Thank you for sharing this with us, Annie. I can understand the feelings regarding the negatives of social media. And of course there are always going to be so-called ‘trolls’ and unfortunately pressures that naturally arise from some people only showing a glossy veneer of their lives and beautiful but not realistic photos of their homes, their happiness and their bodies. But I think it can be a powerful platform for social change, for bringing people together, raising awareness, connecting people all over the world. There’s a lot of goodness in technology and social media.

    Wishing you & yours all the best for a brighter New Year, Annie!  ♥🎉

    Caz xx

    Liked by 1 person

    1. Thank you, dear Caz. We’re certainly in agreement about the value of “the kindness of strangers.” It shouldn’t have been a surprise to me because I’ve already seen how involved we bloggers can get in one another’s lives—and the profound caring that evolves. But Twitter is more remote. Still, when Andrew Kacynski opened up his heart about Francesca, there was an immediacy—and the story is just so heartbreaking.
      The fund is very close to the $500,000 goal. I plan to update my post when it reaches that figure—and continue doing so as long as the numbers are available.
      All good wishes to you for a better, calmer year with no more hospital visits!
      Annie xx💕

      Liked by 1 person

  5. I read about baby Francesca recently, too, and was devastated.
    She reminded me of a little cousin of mine who lost her fight to leukaemia when she was 7.
    30 years after, the daughter of another of my cousins overcame the same form of childhood leukemia at the same age, 7. She is now a peadiatric nurse and is part of a treatment team for children who are fighting cancer.
    In just a few decades advances were made which saved her life. I truly hope the same will happen for this cancer.
    It doesn’t make the loss of baby Beans any easier, but collective interest, research and support may be more productive because of our ability to honour her sweet young life.

    Liked by 1 person

    1. It was one of the most wrenching stories I’d heard in a long time. So sorry to hear of your little cousin. Yes, childhood leukemia has seen great treatment strides. I hope Beans’s legacy will be to improve the outlook for the devastating cancer that took her life. I do know the financial goal has been met, and elevated.

      Liked by 1 person

  6. A tremendously sad story. I have known people who lost a young child and such a thing is devastating.
    I tried Twitter several years ago but couldn’t really see the point, at least in my life.

    Liked by 1 person

  7. I haven’t been getting any of your post alerts sooooo I decided to do some reading it being daylight stupid savings (why do we really need it still?) and I read this and my heart stopped beating. I cried and snipped at Craig asking why if this could happen am I supposed to believe in some fair god that spares the innocent. Because this isn’t fair. And cancer isn’t fair. And trying to explain this to anyone isn’t possible at all. But what you said about Twitter is true and 24/7 I can find someone whose hours are akin to my sleeplessness and restlessness just to know there’s another human being who understands and can truly empathize. Because right now no one I am in human touch with has cancer or had cancer and I can’t get the right to say truly why this is so godawful and while a baby dying from brain cancer would break anyone’s heart, those of us who know why our hearts shatter because we can’t imagine a baby going through chemo like we do and have is earth moving and emotionally tectonic.

    Liked by 1 person

    1. Ilene—
      Thank you for hunting me down; I’ve no idea why WP does that, and I know if I pose the question, I’ll be told the user has to bring it to their attention. If you like, you can try signing on again. I do get notices of your posts.

      I’m glad you find the Twitter community helpful. This story grabbed hold of my heart and hasn’t let go. The cruelty of a cancer that strikes such little ones is just an unfathomable topping the unfathomable nature of cancer per se.

      Andrew Kaczynski and his wife Rachel were on The View recently; I saw a video of their appearance. They’re trying to raise funding for research and awareness of these childhood cancers.

      I look forward to your video and other manifestations of your creativity. I hope you’re more comfortable now than you were after your recent treatment.
      All good wishes,
      Annie

      Liked by 1 person

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