Cancer (noun): Disease caused by an uncontrolled division of abnormal cells in a part of the body.
Hope (noun): Feeling of expectation and desire for a certain thing to happen or be the case.
Krypton's Compete for a Cure: Aaron's Story
It was the middle of the week and it had been dark for what seemed like hours. The neighborhood was beautifully lit making the dark somewhat comfortable in an unfamiliar area. As I grew closer to my destination I felt a quick turn in my stomach, my nerves were rattling through veins like a jackhammer on the sidewalk. I didn’t expect an invitation this late to make up for our previous missed meeting that day. I had never walked away from a story before but today was going to be that day. I only had one reason why I didn’t call Malissa (my boss and owner of Endurance Apparel & Gear) to tell her I’m from the story. My mouth was so incredibly dry there was no way I could form a sentence to explain.
I had never met a child who had cancer. My mind ran wild with thoughts and information overload and I rehearsed my introduction repeatedly. I assumed this is how the big leagues prepared so I did it anyways. I stood at the door praying no one would answer or Malissa would call and say, “just kidding…never mind…I really wasn’t excited about this and you can go home now…” Nope, Scott opened the door with two massive yet relaxed dogs inviting me into his beautiful home. His home was welcoming and unrestrained with high ceilings and nicely place furniture. A place where I would expect a Naval Officer to live especially with as many years he has been serving.
Scott waived me over to meet Aaron who was snuggled up on the couch wrapped in a blanked watching cartoon. Scott said, “Aren’t you going to say hello?” Aaron just smiled as any ten-year-old little boy would do. I said, “You’re famous!” We all just giggled and left it at that. I made my way to the kitchen table with Scott and he offered me a cup of tea. I’m not sure I’ve ever been offered a cup of tea before, I just stuck with “no thank you” only because I wasn’t sure if I wanted tea or not. Scott went ahead and put the kettle on anyways as if he had done it a million times before.
I began to listen to how he had learned Aaron, only four years old at the time, had brain cancer. Scott was deployed and rendered helpless in the middle of the ocean while deployed onboard the USS Enterprise. It would be days before Scott could get to his little boy and wife Elizabeth. Scott recalled trying to log on to his email in Germany to check the status of Aaron but could not seem to access any communication with his family. He took it as a sign that he needed to be patient, strong and optimistic while he waited on his next flight. He later learned that some of the letters on a German keyboard are swapped causing an incorrect password but it kept him optimistic instead of tirelessly worried.
Scott had already welled up a few times overwhelmed with emotion recounting this story from his perspective explaining Elizabeth could tell the story better than he could. She was with Aaron coping with every bit of devastating information and decision as it came her way. At that moment Elizabeth came walking into the dining area just getting home from what seemed like a long day. We politely exchanged words and she moved towards the kettle when Scott said, “I’ve already started tea for you.” Elizabeth is a mom, but not just any kind of mom. She’s lovely, sweet and patient where anyone would feel immediately better after a long day just by being in her presence. There was a familiarity about Elizabeth, but I couldn’t figure it out at the time.
As we shuffled around looking to get settle back into Aaron’s painful story. The now energetic little boy was holding a toy sword coaxing anyone to play. Aaron eventually settled back into his cartoons and Elizabeth told me about the endless tests, how he lost his hair, and was too weak to eat on most days. St. Jude had already taken Aaron’s cancer at this point and had already gone above and beyond for comfort and care. Every family is treated the same she explained and really wanted me to understand the level of care the staff puts into the facility. She told me that Aaron hadn’t eaten in a while and they went to the cafeteria during breakfast hoping he would eat something. Aaron slowly made his way to the hotdog machine but as he got closer realized there were not hotdogs being offered at that time. Elizabeth explained it was breakfast but maybe there will be some for lunch, trying to keep Aaron’s hopes up. The young cashier, who would have no reason or incentive to go out of her way for Aaron, found hotdogs and brought one to him. Aaron could only get a few small bites down, but it was a few small bites more than what he had in days. This story, as tiny as it seems, is the heartbeat of what St. Jude represents.
Throughout the conversation I noticed syringe that looked like an emergency pen for allergic reactions along with some medication neatly placed in front of Scott. I was curious, but I didn’t ask, just assuming it was for Scott and he possibly had a regiment of his own to deal with. As our hours of talking turned into Aaron’s bedtime with an especially big day of Legoland on the horizon, we needed to wrap things up for the night. Scott called for Aaron to come on over and knock out the routine. I realized the allergy pen wasn’t an allergy pen at all nor was it for Scott but for Aaron. He didn’t wince or even blink which was extraordinary to me but to him it was normal. I asked, “does it hurt?” He happily said, “nope!” Scott explain, from the surgeries he’s having trouble with growth and development. I could feel my heart sinking as I realized everything is not always what it seems. I saw over the hours a fun, happy little boy with zero issues and perfectly normal future ahead of him.
I listened to the parents of this cute little boy recall sleepless nights of changing bloody dressing around his port (a line inserted into his chest placed near his heart used for medicine and blood draws), navigating the bathroom, constant exhausting sanitation, and endless prayers of survival. I realized I may not have been really listening at all. St. Jude Hospital does not have any religious affiliation but was named after the Patron Saint of desperate cases and impossible causes. I forgot or dismissed that Aaron once met that criteria or else he would have never been a patient at this facility. Aaron has actual tattoos, specifically eight, used for targets during his radiation treatment. Aaron is aware he has them, Scott and Elizabeth make light of them for Aaron’s sake. They are permanent reminders of each sleepless night these parents spent at a hospital fighting to save Aaron’s life. What I take for granted he dreams of doing one day, such as throwing a basketball to a teammate for an entire game. I failed to realize the gravity even with Aaron standing right in front of me.
I went up to his room to tuck him in with Scott and say goodnight. As soon as the door opened there hung a signed framed poster of Ben Smith doing a rope climb. Ben is one of the people responsible for making Aaron famous, and tells his St. Jude story at the annual Krypton’s Compete for a Cure. As I left the house and Elizabeth said goodbye it struck me that Kim Smith, Ben’s mom and she have the exact same presence. Just days prior I had the chance to talk with key people involved with Krypton and the road to the CrossFit Games ultimately leading to an event where one-hundred percent of the proceeds go to St. Jude.
I will tell you all about those meetings and conversation in Part Two: The Unsung Heroes, with the Kim, Chuck, Ben and Alec Smith, Adam Klink (Ben’s brother not by blood), Georgie the Bostonian Sister (not by blood), Diana Jordan the Krypton’s Compete for a Cure Coordinator, Renee Fairchild the St. Jude Marketing Director, and various others.
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