The ShareGood Blog: A Hug for the Brave Ones by Joe Dean

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sharegood-logo A Hug for the Brave Ones by Joe Dean

Washington, DC: CureFest.
The first thing to strike you is the past tense. Before the cell phones come out and pictures are shared, before the tears and the hugs and the “man, let me buy you a beer” what you hear is a mom or dad discussing their child that “was.” He was a swimmer. She was my everything.

Was. Died. Past tense.

The next thing to strike you is their patience and determination and frustration and optimism in spite of the circumstances. It all makes you wonder how. How is life still possible for these super parents? How is it possible in our country that we have yet to declare a national emergency for our kids? Where is the war on childhood cancer? One is aware of the mind-numbing statistics:

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* More kids are lost to cancer in the U.S. than any other disease – in fact, more than many other childhood diseases combined.
* Every school day, the equivalent of 36 classrooms full of kids are diagnosed with cancer worldwide.
*As we Go Gold to raise awareness this month nearly 21,600 children will be diagnosed with cancer.
*75 percent of the kids who survive will face
long term health problems from the treatment they receive.
• Every two minutes in our world, a child
is diagnosed with cancer.

*Americans spend 20 times more on potato chips than on pediatric cancer research.

But, the statistics are too cold. Approaching the Cure Fest grounds this past weekend – having spent the better part of the last three years trying to get my arms around the pediatric cancer conundrum – I thought I was tuned in, sympathetic, passionate and ready to further pursue this enormous challenge. I walked the Washington, DC mall. I met families, children, survivors. Within an hour, I was walking along with a group of hundreds of children. It was here I felt a new emotion: pure, utter, heart breaking shame. Imagine being alongside of these innocent and potential-filled kids as they approach the Capitol chanting in little child voices: “Please don’t look the other way, seven kids die every day.” I was pretty much their age the day we landed on the moon. I knew then as I know now, that as Americans, when we pull together, we can accomplish seemingly impossible goals.

Following our walk to the Capitol, I met a Grandmother who told me that she is one of the lucky ones. Her grandson is a survivor. “You’ll hear a lot of us talk about living with the sleeping dragon though,” she said. She talked about the day of the diagnosis. “Mostly, I remember standing in a hospital conference room with my daughter as the doctor started discussing the odds of survival for my grandson.” “Then,” she said, “I remember picking my daughter up off the floor.”

“An unspeakable pain” is how Paul describes his life since his best friend, his 10-year-old son Eli, died of cancer. They shared a love of Harley Davidson motorcycles and baseball and being together. Paul survived nine years in the United States Army, and a tour of duty during Operation Desert Storm. He told me that returning from the Middle East he never once suffered PTSD. Except now he does.

joe-dean-cancer-budget“Driving home from the hospital the day Eli died, I decided I had two choices,” Paul says, matter-of-factly. My first choice, we don’t want to talk about. I chose my second choice. It was a promise I made to my son, my hero in life. While at his graveside I promised I would carry out his wishes to find a cure for childhood cancer or that I would die trying. Eli didn’t want other kids to suffer. In fact, Eli had a prayer list that still sits on a shelf in his bedroom; he would pray for other children fighting this monster. One night we asked Eli, ‘did you pray for yourself?’ Eli said, ‘no I forgot about me!’”

Looking at Paul – hearing the story from this gentle warrior and fellow dad – became more difficult for me. So I looked instead at his arm. His tattoo said it all: bELIeve. There’s ELI right in the midst of it. You look at the tattoo, and at the dad who is living out a sacred promise and you see Eli in the belief. Right smack in the middle of it: bELIeve.

joe-dean-cancer-4-marchWalking away from my new friend Paul a young women approaches. She probably sees the tears. “Oh, sharing stories, huh?” she says. Then, unprompted she pulls out her phone and brings up a picture. “Here’s my Zach with hair” she offers. Then, “I’ll never forget the day we told his brother that Zach was going to die.” We’re interrupted; a father walks by with a picture of his little trooper. In the last 10 months his son has endured three surgeries, 17 rounds of chemo, 10 ER visits, 27 hospitalizations, 64 outpatient visits, one admission to the ICU and over 100 nights in the hospital. It is surreal.

There is hope though. Thanks to amazing researchers, philanthropists, concerned parents and incredible doctors, the survival rate for many childhood cancers is now 80-85 percent. This is great progress and great news. I’m an optimist, yet one can’t help but acknowledge this is not good enough. For parents of the 15-20% of the children who do not live, their horror is 100%. Here’s one mom’s experience from a booklet given out by the good people behind the Creating Hope Act:

CARSON

Carson had moxie.
A bold charming confidence
An indomitable spirit
A disarming smile that would warm a room

It was a gift to teach him about life

Then he fought, 1170 days. And he taught us
To live without guile
That courage comes from God
To embrace moments of goodness in the midst of pain

Then he whispered
Don’t let them bury me
Make sure they study those tumors
If those tumors can help the next kid not die like I am, I’d like that
It’s hard to have cancer.

Then he died. Young and fearless.

By, Annette Leslie, Carson’s mother

So there is sadness and there is light. Optimism juxtaposed with the stark reality of the 15-20%. There is angst and heroics and moms and dads fighting the good fight. And, for me at least, there is wondering. How can we not make this a national priority? So, I headed for the airport, full of hope and frustration and a renewed sense of urgency and an overwhelming respect for those in the fight. Still, my emotions were balled up and wrapped in this sense of shame. And the fact that we are doing too little and so often we are too late. The survivors and the advocates have figured out however that being overwhelmed is not a strategy. But come on, this was overwhelming.

joe-dean-cancer-3-litle-girlThen I saw her. As the Uber driver tossed my bag in the backseat of his car, she was standing there. Alone in the park. She reminded of me of my own, now grown, little girl. She stands there sweet T-shirt and pink dress. She looks shy and bald. The message on her shirt calls us back to the moon landing, to possibility thinking, to optimism and determination in the face of the overwhelming numbers. In spite of the circumstances, remarkably, she calls us to live every moment. To joy. The shirt is the perfect antidote to the difficult reality we face as so many great people coalesce around a cure. Her shirt says it all, in the midst of the fight, the little girl implores us to:
Stay Extra Sparkly.

We can do this!
Help make childhood cancer research a national priority.
We have landed on the moon.
Such is the American Dream.

Joe Dean is Founder of Stars and Stripes Honor Flight, an advocate for kids with cancer and a blogger here at Power of Humans. If you’d like to help make childhood cancer research a national priority, please contact Joe on Twitter , on Facebook or simply Google one of the many fantastic childhood cancer organizations or Foundations in your area to discover the many ways in which you can get involved. In the meantime, stay focused, determined, optimistic, and especially, stay extra sparkly.

Click HERE for more ShareGood blogs by Joe Dean.

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