Each September the info graphics 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.
I’m looking at you Jess McKearney, you have brought some solid game this month.
September, Pediatric Cancer Awareness Month. The month where 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.
30 days of awareness, where 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.”
Because really, when did the last awareness month change anything, for any cause? I don’t know. I am a skeptic.
Our dear friends who are also on this relapse road, the road that is cancer, then relapse, then CarT, then HuCarT, received terrible news a couple weeks ago. Despite completing HuCarT this summer, their daughter, Emily’s, cancer is back- worse than ever.
She had all the “best” results and assuredness that the HuCarT was working. Her Day28 biopsies were clear, and even her deep sequencing measure (NGS), was cancer free.
Test results were clear as day. Everything was good.
Except the morning Emily woke-up with a severe headache and nausea. A mom always knows. Her mom texted me. She knew. She didn’t need any tests to confirm. Everything was not good.
The next day they measured Emily’s bone marrow and found it chock-full of Leukemia. In less than 60 days her cancer had gone from immeasurable to filling 80% of her bone marrow.
Everything is good, until it’s not.
I remember the moment that her mom texted me the update that Emily had early b-cell return, indicating CarT failure, from their first round of treatment back in February. 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. Emily’s failure felt 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 like mine, and in what ways does it mean it could be mine? How is their story different than 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 we search for subtle differences in each minute detail of each others story.
It’s a rather selfish thing to admit, but then again, survival, at it’s core, 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 I was on leadership for a MOPs group when a member of the group’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 must 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. 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 that they would feel less suffering than they saw in this dear family.
It’s why we ask about the details in tragic things, I think anyway. Some people flippantly call it gossip, but I think it’s just protection.
We are all just trying to get ourselves home, unscathed. And we are sure that 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 the details, the how, the why, the what about…., the I wouldn’t have…., 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 chose not to get vaccinated. They drove after having one too many drinks. And it is still sad and heartbreaking, but math is math and so, sorry.
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 for no reason. Try as we may to rely on 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, baby wipes, we used stainless steel not plastic, we didn’t eat junk, we didn’t give pharmaceuticals/vaccines, we bought organic clothes, diapers, mattresses. We did ALL THE SURVIVAL MATH 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, once texted me on the topic, “Right. I mean, if the Larrabee’s can’t avoid it, what’s even the point.”
Chance. Bad Luck.
But then we started getting accidentally nudged down and path that was less about chance. What if we had unknowingly put Beau somewhere that had caused this. I’ve written about that at length here, here, and here. What if Beau’s survival math wasn’t about chance as much as it was about chronic immune suppression from a water damaged building?
“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.”
“It just happens, there is no answer.”
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 laid in bed at night and stared at the ceiling until your eyes have felt like they are bleeding, asking, “Did something we did cause this? Did somewhere we put him allow 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 do our math.
The kids are sick, people.
It turns out the data is everywhere, and that is what makes it almost impossible to see. Carcinogens that we spray on our lawns to keep them green, neurotoxins we add to food to enhance flavor and give bright, fun color that the E.U. has banned for their toxicity, toxic additives in vaccines that are listed explicitly in the inserts as ‘cancer causing’ that we inject in our kids, inflammatory “food” that causes a slew of secondary conditions that we feed to our friends and family because it is cheap and convenient, water damaged buildings that house our schools, libraries, local governments, that are capable of suppressing immune systems, the list goes on. There are lawsuits proving the liability of these things, there are peer-reviewed medical journals scientifically proving their cause and effect. But damn, if the threat is everywhere, then the only survival math we can do must include chance.
The short end of the stick.
In college my favorite professor, Dr.D, told me about a study that was done with people who lived downstream from a large dam. They investigated how the levels of concern of the damn breaking changed with the distance away from the dam that the participant lived. Do you know who is the least concerned about living downstream from a dam that could break? The families who lived right at the base.
Our world is riddled with things that are making our children unwell. And we see it. Skyrocketing rates of chronic conditions that are lifestyle based. (I hate to even use the word “lifestyle” because are these kids really choosing a life where they are poisoned. If someone knows a better term, please provide.) The system has been built for our bodies to fail, and oh how lucky, there is another system built for Big Pharma to put us back together. How would we even begin to acknowledge that our food systems, our health systems, our building codes, our welfare systems, etc. are making our kids sick?
So we insert chance.
You couldn’t hang in this highly toxic world? What bad luck.
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.”
It is a swirly mess to unwind. Somedays 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 I claim them as proof that our life won’t end the same way.
But somedays, 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.“
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.
Forget opining about the mine, let’s get back to being the actual canary.
I know now, not perfectly, but better than before, that survival math never adds up. There is no reason why Emily had a negative MRD and NGS test on Day 28 of HuCarT and relapsed 80% in marrow 60 days later, while another patient we follow had a positive NGS test and yet 12+ months later remains cancer-free.
None of it makes sense because survival math is A COPING STRATEGY, not a science.
With clarity, I feel like I am able to set the survival math aside, stop weighing the details, stop attributing the unknowns to chance and just feel what I feel which is:
heartbroken for my friends.
I am not scared for Beau because of Emily plight, I am not hedging statistics, I am sad.
I am sad for my friend Lorin, Emily’s mama.
I am sad for Emily.
I am sad for all the canaries.
Emily has started another round of very intense chemo to work toward remission, and move immediately on to a bone marrow transplant. It is important that she reaches remission, as you can’t move to transplant without it. She will have her bone marrow biopsy, to check for remission, on October 7th.
If you are a praying person, would you pray for Emily and her family. Maybe setting an alarm for the 7th. Praying for remission. Or just pray for her mama, Lorin, who humbly and graciously walks her daughter through this unimaginable. If you plan to pray for her, would you drop a comment below. I am sure she would love to read them.
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. When I watch my in real life friend holding her family together, I can’t bother with an eye catching info graphic to raise awareness that childhood cancer is NOT rare.
I can’t prove to you that our children are the canaries, and we must investigate the mine.
But I can do one thing. One thing for Pediatric Cancer Awareness Month. I can ask, what would it 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 sat with our friends in the hardest of hard. Instead of coping with tragedy by pushing it away with cliche phrases, and promising prayers and well wishes, we leaned in so close that we wondered if we too would be burned.
P.S. My dear friend who I mention in this post who lost her son Charlie in 2017, started a non-profit to care for bereaved siblings. I am so proud of the work her and husband have done with the non-profit, Charlie’s Guys, and would love if you would take a look at their site and consider supporting them.