Outwork the noise means something different for each of us.

Robyn Spoon, Elevate Founder shares what this meant to Justin, and what it means to Elevate, this September, during Childhood Cancer Awareness Month, and every day.

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     A few weeks after our son, Justin, died from rhabdomyosarcoma, we found a journal from 2019, a year prior to his diagnosis. One entry in particular stood out to us…it was a bit of a pep talk, I suspect. See, he was a competitive distance runner and by that point he had achieved quite a lot. Yet, he had doubts.  

   I often think about the mental game he experienced every time he stood on the start line knowing he had 5 miles stretching in front of him. It wasn’t really until I read this entry that I began to consider the daily mental and spiritual effort it took to achieve all he had. There were  days when he had to drown out the doubts he had about himself as well as the doubts he may have perceived coming from others around him…

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May 2019

 

“Note to self:

 They are going to call you crazy. They’re gonna say you’re too serious. You don’t take time to relax. They’re gonna call you a freak. A dork. A loser. Whatever they call you now, it doesn’t matter. They look down on you now, but at the end of the day they’re gonna call you a champion. 

 And on that same day, the people who called you crazy are gonna praise your work ethic, your determination. And you’re gonna have to deal with that, to. Don’t listen to those voices. Let your hard work, sweat and exertion drown out the noise.

 Outwork the noise.”

-Justin Spoon

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     The interesting thing about this noise he described isn’t that he thought people didn’t believe he could do it, but instead that he perceived that others didn’t think it was worth his crazy level of dedication. Sometimes he probably wondered the same.

   While Justin did have the chance to run on the national stage, and just prior to his rhabdomyosarcoma diagnosis, he was ranked in the top 25 in his division in the nation, he never got the chance to run in what would have been his third and final national race.

   The first symptom of the disease that would ultimately take his life appeared next to his nostril weeks before the qualifying race. Instead of racing, he was recovering from the biopsy that confirmed his cancer diagnosis.

   Over the next 28 months, we watched him apply some of this same level of mental and spiritual fortitude to ‘outwork the noise‘ throughout his diagnosis and treatment for rhabdomyosarcoma. He leaned heavily into his relationship with Christ to draw the strength and focus needed to continue to live a meaningful life as he faced a deadly disease. 

 

    A copy of his journal entry sits in a frame on my desk. I reflect on it every day as I face the doubts that can so easily creep into my efforts to impact change for children facing a cancer diagnosis. It serves as my pep talk each day. I get to kind of imagine him sharing these words with me now. I reflect on Justin’s daily efforts as he sought out his goal of becoming a champion, and I remember his sweat, exertion, and determination. 

   During my first ever “in the club” Childhood Cancer Awareness Month, we were in the final stretch of Justin’s frontline chemo for rhabdomyosarcoma. We’d been at it for long enough to know that childhood cancer treatments were, in many ways, 40-50 years behind most adult cancers in terms of treatment options. We’d had a front-row seat to the toxic and less-than-effective treatments. We’d seen the devastating toll it was taking on his once lean and strong body.  

   I was excited about Childhood Cancer Awareness Month. I saw it as a time and an opportunity to be heard, to be understood, and to come together not only with those who were impacted directly by childhood cancer, like us but also with those members of the community who had become supporters in the midst of our terrible. 

  During that first Childhood Cancer Awareness Month, I found myself joining the chorus of those families like myself, repeating what I saw and heard from others. I saw tons of stories of families like ours that had been tragically impacted by the #1 cause of death by disease in our children. I began to notice a desperate plea among them…especially from those who had been around for a while. 

 

Random facts.

Desperate for change.

Kids suffering.

Needing to be heard.

Disease to disability.

Misunderstood.

Not rare, not fair.

 

It all felt overwhelming to me. Noisy.

 

 

     As Elevate prepares for Childhood Cancer Awareness Month, we’ve had many internal discussions about what we want to share with the world at this moment in time and how we can ensure that our message is clear, accurate, and welcoming to all. 

 

    Maybe you’ve been sitting on the sidelines uncertain about whether or not the facts shared are accurate. Maybe you aren’t sure if awareness and advocacy matters. And maybe you’ve been nervous about joining the movement of awareness because you haven’t been directly impacted by childhood cancer. 

 

    Elevate is going to ‘Outwork the noise‘ this September. We strive to share the most up-to-date and cited information we can. If you see a piece of data we share that you feel isn’t accurate, please message us and send a new citation. The information is constantly evolving! 

   It turns out that advocacy efforts are working…in phases and chunks! The federal budget for childhood cancer has nearly doubled in recent years. The five-year survival rate for all types of childhood cancer grew from about 63% of those diagnosed in 1974 to over 84% in 2010. We’ve seen only tiny improvements in the five-year survivorship rate since then. In order to improve the five-year survivorship rate, we need new therapies.

   We need our survivors to thrive.

   That will require more targeted and less toxic treatments. Unfortunately, the toxicity and the lack of treatments that provide long-term, more curative outcomes means that a large percentage of our five-year survivors still have cancer or will go on to develop secondary cancers or life-threatening conditions, resulting “disease to disability” and in many cases, early death. 

     Before Justin had cancer, I thought most kids diagnosed with cancer underwent treatment and then went on to live long and healthy lives. Unfortunately, the data tells us otherwise.

Nearly 30% of the lives lost from childhood cancer happen after that magic five-year mark!

We are regularly asked, “Why”? Why aren’t there better treatment options for our kids? 

 

    Children, on average, wait 6.5 years longer than adults for the newest drugs to become available.

    Rarely is a new drug developed specifically for kids. Only about 11 drugs have been FDA-approved specifically for children in the same time period that nearly 300 have been approved for adults. Developing new therapies for childhood cancer is complicated and expensive, but we know that overcoming the complications and costs is worth it! 

 

     Most importantly, thousands of kids in the United States alone, die every year of cancer. Justin isn’t included in those statistics because he was over 18 at the time of his diagnosis. 

 

    Elevate seeks to empower advocates with the best possible information, knowledge and skills to advocate for our kids to ensure that kids are at the center of the efforts and decisions, ultimately resulting in long, thriving, healthy lives for those diagnosed with childhood cancer.

 

   Elevate is committed to joining together to OUTWORK THE NOISE, and ‘let kids be kids.’

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