As parents, we always try to instill a strong sense of confidence, happiness, and to continuously assure them that life is worth living. These values can become much harder to show and share with a child when they are faced with a life threatening illness.
This was the tragic case for father Bill Kohler after discovering that his son was diagnosed with two diffuse intrinsic pontine glioma (DIPG) tumors. Doctors predicted that this rare form of cancer (which affects the brain stem) would give Bill’s 9-year-old son Ayden barely a year to live.
Bill was hopeful that he could get Ayden into clinical trials to help his case, but he was denied over and over, and his condition grew worse each day. Being an Army medic, Bill felt helpless realizing that he could not help his son.
“I was a medic in the war, you know, and you fix things...this was something I couldn’t even touch.” he said.
Unable to do anything to fix their son’s diagnosis, Ayden’s parents chose to focus on the positive, and make every day that Ayden had left an amazing one. The couple worked tirelessly to make the young boy’s dreams come true; they were able to introduce him to wrestling stars, semi professional athletes, and enjoy activities like hunting.
“We looked at the day, and we looked at how we could make that day the best we could.” said Ayden’s mother Jennifer.
While the family did their best to keep Ayden happy every day, he eventually found it difficult to breathe, eat, and walk on his own. That’s when Ayden uttered the words hoped they would never hear: “I gotta quit”.
Bill’s tearful response was the kind only a loving parent could say: “I’ll make you a promise. If you’ve fought as much as you can and as hard as you can and you feel you fought that hard, I promise you it’s okay to quit.”
Even though Ayden was struggling, he decided to keep fighting. He tragically lost his battle just 7 months after his diagnosis.
Knowing that he had his family’s unconditional love and support, Ayden was able to let go. Though the loss of Ayden is an extremely tough one, it is clear that his family did everything they could to make sure his last months on earth were filled with joy and unforgettable memories.
All Ayden asked of his parents was this: “If people gather to remember me, I want them to dance, sing, and take group pictures.If anyone asks how I want to be remembered, please say happy, funny, athletic, wise, fighter, caring, and selfless.”
To carry on Ayden’s legacy, donations can be made in his name at the Johns Hopkins Kimmel Cancer Center to continue the fight against DIPG.
What do you think of Ayden’s story and the promise his father made to him?
