Originally published in September 2021; republished in September 2026.
Every September the infographics start flooding my Facebook feed. As though they finally have an excuse to scream these statistics at the top of their lungs, all my cancer mom friends fill their pages with data on childhood cancer that everyone needs to know.
September, Childhood Cancer Awareness Month.
The month when everywhere goes gold, Amazon sends out some packages in gold boxes, and I can awkwardly ask you if you do realize that we spend more as a country on Starbucks than we do on pediatric cancer research.
Thirty days of awareness, when you grant me extra permission to say all the painful truths about an underfunded and tragically misunderstood crisis, and then you pat me on the head and think, “Gosh, that Betsy, such a hard road she is on.”
This September, while everyone was talking about childhood cancer, our dear friends were living the part no infographic can explain.
Our dear friends who were also on this relapse road with us, the road that is cancer, then relapse, then CAR-T, then HuCAR-T, received terrible news.
Despite completing HuCAR-T this past summer, their daughter Emily’s cancer was back, worse than ever.
It didn’t add up.
She had all the “best” results and assurances that the HuCAR-T was working. Her Day 28 biopsies were clear, and even her deep-sequencing measurement, NGS, found no detectable cancer.
Test results were clear as day. Everything was good.
Except the morning Sweet Emily woke up with a severe headache and nausea.
Her mom texted me. She knew. A mom always knows.
She didn’t need any tests to confirm. Everything was not good.
The next day they tested Sweet Emily’s bone marrow and found it chock-full of leukemia. In less than 60 days, her cancer had gone from undetectable to filling 80% of her bone marrow.
Everything is good, until it’s not.
I remember when Sweet Emily’s mom texted me months earlier, back in February, with the update that she had early B-cell return after her first CAR-T treatment, indicating that it was failing.
I sat in the Whole Foods parking lot and cried.
We were weeks out from leaving for Philadelphia, and this whole thing felt like one giant Hail Mary. They were the only light at the end of this ominous relapse tunnel.
Sweet Emily’s failure felt fully intertwined with Beaudin’s survival.
Cancer friendships are a funny thing. You go from stranger to close confidant in moments. An indescribable sense of community born of shared suffering. They give you a sounding board when even the best of your other relationships leave you feeling misunderstood.
But while you commiserate and connect, you also instinctively draw conclusions and differences. How is their story likemine, and in what ways does it mean it could be mine? How is their story different from mine, and in what ways does that mean I will be spared their suffering?
It’s impossible not to wonder.
Desperate to piece together a future where we will feel less suffering than we see in others, we connect deeply while searching for subtle differences in each minute detail of each other’s story.
It’s a rather selfish thing to admit, but then again, survival itself is purely selfish, is it not? Cancer parents get it, the selfish nature of survival, and so there is no shame in sharing or asking for every last detail. You exchange similarities and differences freely, knowing that you are each doing the survival math. Praying for a sum that leans in your favor.
I’d say cancer parents are some of the best at survival math, but all humans do it.
In 2017, before cancer made me fluent in survival math, I was on leadership for a MOPS group when a member’s young son died in his sleep.* It was tragedy of the worst kind. The leadership team was tasked with delivering the news to the group of 70 moms.
We had many concerns about the best way to do it. We wanted moms to be informed in a way that would allow us all to fully support the family, but we also wanted to be careful about starting a rumor mill. We wondered what details to keep private. We wanted to inform the moms, but we also wanted to protect the family that was swallowed by grief.
The problem was, the first question every single mom asked was, “But how did it happen?”
Leaders worried about the “gossip,” but I saw it for what it was. It wasn’t gossip. It was survival math. The most obvious of all coping strategies. The one you employ when you come face to face with the fragility of life: figure out where the threat is, and put as much distance as you can between you and said threat.
The moms didn’t want the details to gossip. They wanted the details to piece together a future where they could arrange their pieces to ensure they would feel less suffering than they saw in this dear family.
Survival math.
We are all just trying to get ourselves home, unscathed. And we are sure there is some equation to be solved. There is either a methodical way we can ensure that what happened to them won’t happen to me, or there is no point in any of it, and SO WHY EVEN GET OUT OF BED TODAY!!!
So we ask how and why, and we fill in the equation for the sum to be in favor of our survival.
It happened to them, but by my calculations it won’t happen to me.
Sometimes survival math is obvious. They weren’t wearing a seatbelt. They drove after having one too many drinks. It is still sad and heartbreaking, but math is math and so…
But what about when the math just doesn’t add up?
Like a child who dies in his sleep for no reason or a child who wakes up riddled with cancer.
Try as we may to use survival math to distance ourselves from the pain, it doesn’t add up easily, so we switch out one of the addends for the variable known and loved by humans when confronted with the unimaginable: chance.
I started seeing the chance side of the survival-math equation when Beau was diagnosed. Because we did ALL THE THINGS RIGHT. We ate organic, we filtered our water, we made our own sunscreen, toothpaste, and baby wipes. We used stainless steel, not plastic. We didn’t eat junk, we didn’t give pharmaceuticals or vaccines, and we bought organic clothes, diapers, and mattresses. We did ALL THE SURVIVAL MATH we knew, and our little boy woke up riddled with cancer.
We started asking the “Why did this happen?” question out loud.
We didn’t have any sure answers, and that was horrifying to everyone. A friend who knew all the ways we lived texted me on the topic: “Right. I mean, if the Larrabees can’t avoid it, what’s even the point?”
Chance. Bad luck.
What if Beau’s survival math wasn’t only about chance?
“They are looking for a scapegoat,” close friends whispered to each other.
“They are just speaking from their grief. They can’t let it go.”
Turns out that survival math is much easier if you believe that cancer just happens to children and that somehow Beau pulled the short stick in the childhood cancer lottery.
But until you have lain in bed at night and stared at the ceiling until your eyes felt like they were bleeding, asking, “Did something we did cause this? Did somewhere we put him contribute to this?”
Until you have read journal article after journal article detailing the not rare statistics around childhood cancer.
Until your friend group has transformed into parents whose children are riddled with disease with no cause.
Until you have paid thousands of dollars for third-party testing and expert consults.
Well, then I guess it really doesn’t matter to me how you would do our math.
The kids are sick, people.
The data is everywhere, and that is what makes it almost impossible to see. We spray carcinogens on our lawns to keep them green. We add substances to food for flavor and bright, fun colors, including some restricted altogether in other countries because of health concerns. We feed our friends and family highly processed “food” because it is cheap and convenient. Water-damaged buildings house our schools, libraries, and local governments. Profit over people, basic math.
There is evidence. There are lawsuits. There are journal articles.
And damn, if the threat might be everywhere, then the only survival math we can compute must include chance.
Bad luck.
The short end of the stick.
It’s like the canary in the coal mine.
If the canary got sick, how wild would it be for the miners to claim, “You are just making our mine a scapegoat for your bad luck.”
Some days I understand that everyone needs to distance themselves from Beau’s cancer.
I know this because I am a pro at survival math. Every time a cancer friend’s story deviates from ours, I find the differences and claim them as proof that our life won’t end the same way.
But some days, it’s harder. When we ask aloud if our son was the canary in the coal mine and, instead of being concerned that the canary was taken out, they whisper to each other, “Well, you can’t blame the mine.”
No, I am trying to figure out why my son may die. That’s all.
“We are sorry Beau was the canary, but we all seem fine, so maybe it’s just him.”
Yup, maybe.
Chance. Bad luck. Survival math. Push away the unimaginable.
Anyway, back to Emily, back to cancer, back to the world where it doesn’t matter what you think the cause of cancer is because we are too busy surviving it.
There is no reason why Sweet Emily had negative MRD and NGS tests on Day 28 of HuCAR-T, meaning even highly sensitive tests could not find residual cancer, and then relapsed with 80% of her marrow filled with leukemia 60 days later, while another patient we followed had a positive NGS test and yet remained cancer-free more than 12 months later.
None of it makes sense because survival math is A COPING STRATEGY, not a science.
I am not scared for Beau because of Sweet Emily’s plight.
I am not hedging statistics.
I am sad for my friends.
The sustained grief of leukemia always seems heaviest for me in September. The 30 days when I feel like I should be shouting all the statistics about the mine, and yet I can’t find the words to say. I can’t bother.
While I am in real life holding our family together, I can’t bother with an eye-catching infographic to raise awareness that childhood cancer is NOT rare.
It’s exhausting to be the town cryer, clanging about that our children are the canaries, and harping that we need to investigate the mine!
But I can do one thing.
One thing for Childhood Cancer Awareness Month. I can ask: what it would look like if, in the face of the unimaginable, we set aside the reaction to do survival math.
What would it look like if, in spite of wanting to distance ourselves from the pain, we stopped pushing tragedy away with clichés and well wishes offered from a safe distance and stayed with our friends in the hardest of hard?
Five years after I first wrote this, I am ready for September to go gold. If you want to help me do that, subscribe to The Heavy Wait. It costs zero dollars. The only investment is a little of your time. You are just saying, “Okay. I’m listening.”
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