This month I’m dedicating my Reason To Live Friday posts to September’s Childhood Cancer Awareness month. Did you know cancer among children under the age of 15 is the second cause of death? Did you know that there has been only one new pediatric cancer drug approved by the FDA in the last 20 years? Shameful.
Kyle was like any boy. Well, okay, he wasn’t just ANY boy. He was Kylie Wylie. The fearless 3 year old that learned how to ride a two-wheeler before his older brother, Nicolas. The youngest of two boys of my friend Christin. He loved football, riding bikes, swimming, popping wheelies, ice cream sundaes and dragonflies.
Just a couple weeks after his 6th birthday, Kyle was complaining of double vision. A misshap against the coffee table and his older brother Nicolas, caused Christin to be concerned if he bumped his head a little too hard. I mean come on. Boys play rough. This wasn’t new. But after tests and an MRI, the news that they didn’t ever expect, nor would any parent even dream of, or fathom, was given to them. Kyle had a Diffuse Intrinsic Pontine Glioma.
If you want to get depressed, Google it. It’s horrible. This type of cancerous brain tumor is inoperable and terminal. Most kids have just a year to live after diagnosis. There’s only about 200 cases diagnosed a year. I think you have more chances of winning the lottery or getting struck by lightening, than getting this type of cancer. But this is no lottery. The payload is heavy and cruel.
Kyle would make the drive with his mom for 2 hours from his home just south of the Canadian/Washington border to Seattle’s Children’s Hospital. Groundbreaking treatments and clinical trials would be used to create a miracle. I would never entertain for a second, that my kid WOULDN’T be a miracle. If it were MY kid, the cure would be found in the nick of time. Kyle was special. He deserved to live. No kid deserves to die of cancer. I know this is what Kyle’s family must have thought each treatment day. Please, please let there be a miracle.
Kyle defied odds and lived a whole 2 years from his diagnosis. His drive never stopped. I got to meet him once for a benefit at the Experience Music Project. A band came to play and donated their time, Jake Locker (now QB of the Tennessee Titans and then University of Washington quarterback) donated Husky memorabilia signed for the cause. We sold t-shirts with OO-UM-GOWA Kylie’s got the POWA! printed on them. I don’t know where that phrase came from. He just made it up. It was his mantra. His tag line going in to treatment. He would kick cancer’s ass. Or at least let it be known that he wouldn’t go down easy. Even just meeting this little boy once, I was under his spell. We sent cards and wishes to him all the time. His aunt, Melissa, is one of my best friends from college. This was the connection. Such a close family. Rallying around their boy to give him an ultimate ride despite the hell his body was going through.
I’ll never forget the Facebook status on February 7, 2009 from Melissa that read, “Kyle is popping wheelies in heaven now.” I couldn’t believe it. He was so strong for so long. And then that evil tumor wouldn’t relent. Dammit. Thinking about Kyle’s mom, holding him, letting him know, that he can go now, his work is done, breaks me down to pieces every time. His memorial was, how do I say? Glorious. Hundreds of people. We all wore hot pink. His favorite color. For a cool 8 year old, Kyle danced to his own drum. He made friends, shared his light, made us all aware of the precious gift each sunrise can be.
On January 17, 2010, what would have been Kyle’s 9th birthday, his mom and his brother celebrated by eating ice cream for breakfast lunch and dinner. Dozens of us did the same in solidarity. We posted our flavors on Facebook and called it Ice Cream Day. Kyle taught us that sometimes, you have to eat dessert first. We do this every January 17th. Eat ice cream for breakfast, lunch and dinner. Maybe you will too.
I did not write the following, but Kyle’s mom posted it on their blog soon after Kyle passed away.
It’s the story of Waterbugs and Dragonflies. It will leave you weeping. I’m sorry. But if you’ve lost a loved one, you can be comforted in the dragonfly’s story.
Waterbugs and Dragonflies
Down below the surface of a quiet pond lived a little colony of water bugs. They were a happy colony, living far away from the sun. For many months they were very busy, scurrying over the soft mud on the bottom of the pond. They did notice that every once in awhile one of their colony seemed to lose interest in going about. Clinging to the stem of a pond lily it gradually moved out of sight and was seen no more.
“Look!” said one of the water bugs to another. “One of our colony is climbing up the lily stalk. Where do you think she is going?” Up, up, up it slowly went….Even as they watched, the water bug disappeared from sight. Its friends waited and waited but it didn’t return…
“That’s funny!” said one water bug to another. “Wasn’t she happy here?” asked a second… “Where do you suppose she went?” wondered a third.
No one had an answer. They were greatly puzzled. Finally one of the water bugs, a leader in the colony, gathered its friends together. “I have an idea”. The next one of us who climbs up the lily stalk must promise to come back and tell us where he or she went and why.” “We promise”, they said solemnly.
One spring day, not long after, the very water bug who had suggested the plan found himself climbing up the lily stalk. Up, up, up, he went. Before he knew what was happening, he had broke through the surface of the water and fallen onto the broad, green lily pad above.
When he awoke, he looked about with surprise. He couldn’t believe what he saw. A startling change had come to his old body. His movement revealed four silver wings and a long tail. Even as he struggled, he felt an impulse to move his wings…The warmth of the sun soon dried the moisture from the new body. He moved his wings again and suddenly found himself up above the water. He had become a dragonfly!!
Swooping and dipping in great curves, he flew through the air. He felt exhilarated in the new atmosphere. By and by the new dragonfly lighted happily on a lily pad to rest. Then it was that he chanced to look below to the bottom of the pond. Why, he was right above his old friends, the water bugs! There they were scurrying around, just as he had been doing some time before.
The dragonfly remembered the promise: “The next one of us who climbs up the lily stalk will come back and tell where he or she went and why.” Without thinking, the dragonfly darted down. Suddenly he hit the surface of the water and bounced away. Now that he was a dragonfly, he could no longer go into the water…
“I can’t return!” he said in dismay. “At least, I tried. But I can’t keep my promise. Even if I could go back, not one of the water bugs would know me in my new body. I guess I’ll just have to wait until they become dragonflies too. Then they’ll understand what has happened to me, and where I went.”
And the dragonfly winged off happily into its wonderful new world of sun and air…….