Throwing Marshmallows to Bears

My family is forced to endure many quirks. It’s part of the price of admission to my ride and I seem to latch on to more as the years go by.

One constant is my love of roadside attractions. I absolutely adore them! The cheesier the better. Who doesn’t get the urge to stop when they see the sign for the home of Superman, Metropolis, Illinois or the world’s largest ball of string?

Years ago, I was headed to Gatlinburg with my oldest two girls when I saw a sign in Cherokee, North Carolina that said you could feed bears. Think we stopped?

Of course we stopped. We bought our little bags of bear food and soon found ourselves standing on a walkway looking down into pits that housed the massive creatures. They were looking up and waving at us for their food.

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Their food? Marshmallows.

Think of the ridiculous nature of the scene. My curly, blonde little girls, weighing somewhere between 30 and 50 pounds each at the time, awkwardly throwing little puffy balls of sugar at docile-looking 400 to 500 pound bears. At some point, I noticed my girls were actually having a picnic with them – throw one, eat one, throw one, etc. and the bears were getting restless. They never marveled at the size of the bear or the unnatural setting – they were just enjoying their marshmallows with their furry companions as if seated on a checkered blanket together.

Sometimes you witness a scene such as that and it makes you wonder at its absurdity.

But we do the same thing. Let me construct another scene for you.

In February of 2014, our youngest daughter, Kylie was in the 6th grade. We had just gotten back from a Disneyworld vacation when her knee started to hurt. Doctors initially thought it was from all of the walking we did. In March they moved on to a growth plate issue, and then in April we heard the words, “Your child has cancer.”

What I learned on that day was that if I had gotten the same cancer as Kylie had when I was her age, I would have had the same treatment. You heard that right. The treatments for many childhood cancers have changed little in the last forty years.

With all of the scientific, medical, and technological advancements we’ve made in four decades, when it comes to childhood cancer, we are still only throwing marshmallows at bears.

Marshmallows won’t stop the problem bear – they won’t even slow it down if it is really angry. You can hurl all the sweets at it you want but that bear will keep on coming. Like a low budget horror film, the more you stop to throw, the closer the bear gets with its fangs, claws, and mighty roar.

And the childhood cancer bear is getting hungrier. Incidences are up 24% over the last forty years and it is the leading cause of death by disease for children.

So what are we doing as a society?

Sadly, very little.

 Consider this:

  • All childhood cancers combined receive less than 4% of federal cancer research funding – and overall funding dollars took a massive hit in the 2018 budget.
  • Prostate cancer receives 5%.
  • Since 1980, only 4 drugs have been approved specifically for children.
  • 1 in 5 children do not survive.

I picked on prostate cancer and there is a good reason.

  • The average age at diagnosis for childhood cancer is 6 years-old.
  • The average age at diagnosis for prostate cancer is 66 years-old.

The overall cure rate for all childhood cancers combined is 83% and prostate cancer is 95%. Yet our government is spending more research dollars there than on all childhood cancers.

You tell me one 66-year-old grandfather with prostate cancer who would say this is fair! Kylie’s granddaddy, a prostate cancer survivor wouldn’t. In fact, he prayed with the rest of us for God to take him instead.

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The marshmallows we threw at Kylie’s bear were inadequate, unsafe, and in the end, ineffective. We must find new ways to beat cancer and private funding of cutting-edge research is crucial. If we stand outside the pit and trust the government to do it, that bear will keep coming for our children.

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Remember those bears that we visited when my girls were young? Soon after we left, two tribal elders fought on the bears’ behalf and the park was closed down. All of the bears were moved to a new life with room to roam. No more marshmallows hurled into enclosures. Real food.

This is what we need for children with cancer. We need to stop throwing marshmallows and work together to find the solution. Our children are depending on us.

Crossing a Threshold

Smiley for Kylie is a non-profit dedicated to finding a cure for childhood cancer. The mission was not hard to decide upon because it was exactly what Kylie told us to do before she died: cure childhood cancer. I am excited to say that we just crossed a threshold. Since Kylie was diagnosed in April of 2014, her impact has now driven over $100,000 into childhood cancer research.

Our little non-profit ended 2017 with a flurry of giving that took us to $111,000!

I am blown away by the generosity and hard work of family, friends, and people who never even met Kylie. Kylie’s family would also like to thank our Board of Directors who support us in everything we do. We love giving away money to fund research and I would like to share a little backstory that will help explain what guided our decisions.

When Kylie was diagnosed with Ewing’s sarcoma, my employer urged me to have the DNA of her tissue mapped. He was funding genetic research at MD Anderson and facilitated the testing of Kylie’s tumor. The hope was that the results would show which genes were over-expressed and causing the mutation of cells. At the time, this type of research was making its way into adult treatments for cancer. We soon found out that with children, we weren’t there yet.

The mix of chemotherapy and radiation she received was decades old. In fact, if I had gotten the same cancer when I was her age, I would have received the same treatment. With all of our advances in science and medicine, most treatments for childhood cancers have remained the same for forty years. While our doctors received complete DNA results from her tumor tissue, they had no use for the data. Her treatment didn’t change one iota because just three years ago, genetic testing had yet to impact care in children. But that is changing.

CURE Childhood Cancer has committed $4.5 million so that Children’s Healthcare of Atlanta can establish The Aflac Cancer Center’s new Precision Medicine Program. Joining a handful of existing programs, this innovative entity will take the fight against childhood cancer to the genetic level by identifying the root cause of the child’s cancer and targeting specific therapies directly to the wayward cells. No longer will we paint with a broad brush. Soon we will be able to isolate the offending cells and destroy only them. With success, this could become frontline treatment in the future; a child is diagnosed, their genes are sequenced, and a treatment is tailored specifically to their cancer.

Based on our cancer experience, this is a great step for children fighting cancer and Smiley for Kylie is proud to be a part of it by awarding a majority of our funding to CURE for this purpose. I wish we had more to give.

Another portion went to 1 Million 4 Anna – a non-profit that focuses solely on Ewing’s sarcoma research. The organization was founded by the Basso Family in honor of their lovely daughter, Anna who, like Kylie, succumbed to the disease.

Could 2018 be the year of great breakthrough? We hope.

And how would I feel if in 2018 our little organization had a small part in finding a cure for childhood cancer? I would be ecstatic. It would be the realization of my newfound and unfortunate life purpose. But I know there would be that small side of me that would ache that it was discovered too late for my little girl. I admit that I’m jealous now when I see good results posted and when I see the bell rung signifying the end of treatment. It hurts just a little because in Kylie’s ten months of treatment, we never got good news.

It doesn’t take long for me to snap out of it. Of course I want every child to beat this disease. I’m jealous, not inhuman. That is what Kylie would want, too. And I figure if I can be just a little more like her, maybe we can make a dent in this thing