My grandmother had chutzpah. Like many children of the depression, she hoarded sugar and ketchup packets from every restaurant trip and we found boxes full of them when we cleaned out her home. She clipped coupons and saved every dime she could like a miser afraid they would run out. But she also gave the best gifts.
Before her health declined she was at the mall with her retirement community when she noticed a queue forming with a Denver Broncos banner at the front. Knowing that I loved the team, she stooped over extra low, assumed a meager posture and got in line. She began talking to the people in front of her – evoking sympathy from each until they allowed her to cut her way to the front where she stood in front of John Elway who was signing autographs. There she wove a story about her little grandson who loved the Broncos but lived too far away to get to a game. She left with a very special signed photograph.
I have a mental picture of her clicking her heels when she got out of sight and I’m sure she never mentioned that her little grandson was a senior in college. I love that gift – not because of the cost. Rather, I love it because of the story behind it and the fact that it is uniquely mine.
What is the best gift you ever received?
Since you are on this website, I have to assume you have unwrapped cancer at some point in your life and I am sorry. That is a gift we all wish we could have returned. It comes with no receipt or exchange policy. No, like the gameshow says, once you buy this prize it is yours to keep.
I sat in the dreaded hospital consulting room on April 9, 2014 where a doctor told me that my youngest daughter, Kylie had metastatic Ewing’s Sarcoma and a poor prognosis. Oh, how I wished for a receipt. During the ten months she fought, I looked for any way I could to give that gift back. But no one would take it. She died on February 13, 2015. Some gifts are for keeps.
Fortunately, not all childhood cancer stories end like mine. Many children survive, but the treatment is brutal. I remember the pain, mouth sores, and how sick she got from chemo – to the point that she had to have a stomach tube put in for nourishment. It was an awful time watching her suffer.
But there were good times along the way and the canvas of cancer intensifies the contrasting colors of joy.
Some choose to be private about their battle with cancer and I respect that – everyone has to fight their own way. We chose to be public and use social media to encourage our patient. At twelve, Kylie was already an accomplished actress and loved Broadway. When word of her cancer spread, there was this amazing web of connections that came out of the woodwork until major Broadway stars were posting pictures and videos just for our little girl. We called it being #SmileyForKylie and it seemed that every day someone of note posted a new one. Like the autograph my grandmother got for me, those gifts of encouragement cost nothing, but were priceless.
In the midst of a particularly harsh round of chemo, I remember telling her that she could use cancer as an opportunity to actually meet Broadway stars and maybe even start a career – a notion she instantly discounted. “Cancer isn’t an opportunity,” she said. “It’s just a terrible thing.”
Yet, the dreamer in me persisted. Sometimes we parents have these brilliant ideas that fall flat. In fact, most of my schemes bomb violently. But every once in a while, through kismet or divine intervention, something brilliant happens.
Soon after that conversation, I was approached by the Make-a-Wish Foundation about Kylie singing at their gala. She accepted and of course chose a song from a Broadway musical. When word got out, she was contacted personally by the writer and one of the lead actresses from that musical who asked if she would compare notes. It was huge for her!
These little touches became a radiant light in Kylie’s darkest hours. I am not sure how we would have endured without them and they wouldn’t have come without the gift of cancer. Of course, I would give it back in a heartbeat. But cancer is a fact I cannot change.
You can’t change your cancer either, but how can you use it to make the fight a little more bearable? The slivers of light you get during this terrible time are crucial to your child’s ability to persevere.
Maybe your son likes football or baseball. I promise there is a team or player ready to encourage him. There are a host of people and organizations that will rally to make dreams come true for a child with cancer. You never know what contacts your friends and community of support have until you let your child’s desires be known. We didn’t know anyone on Broadway, yet nearly every musical running during her illness Tweeted out to Kylie. (I would caution about being too specific or unrealistic. Every kid wants to meet Taylor Swift, but her schedule could never allow that.)
While the primary objective of reaching out for encouragement is helping your child through the toughest fight of their life, the other thing this does is shine a spotlight on the need for safer and more effective treatments for childhood cancer.
So I encourage you to be bold and make your child’s desires known to your community of support and whoever else will listen. You just never know what could happen. You might get a surprise that will encourage your little one through today… and then you can work for tomorrow.
Mark Myers is a writer, public speaker, runner, veteran and most importantly a childhood cancer advocate following the loss of his youngest daughter Kylie to Ewing’s Sarcoma in February 2015. He blogs at www.markmyers.net and his Book Missing Kylie is available on Amazon.com.