As a parent, there are some things that we simply never want to have to discuss with our children, without a doubt the toughest is having a discussion with your child regarding his passing away!
Sadly though that is just what this father had to do! Bill Kohler was just in this position with his son, Ayden, who has been found to have a diffuse intrinsic pontine glioma, which is as serious as it sounds!
This illness, DIPG for short is a very rare condition that causes a problem with the bain stem, commonly patients don’t live for more than a year after diagnosis of this condition.
HIs son’s case was even more severe and he didn’t just have one but he had two brain tumors, he knew that he was dying, what a brave boy!
His father was a medic and had completed his tour in Iraq, Kohler, so he knew a lot more than the average parent would about these things, especially about what it was like to lose people, he just didn’t expect it to be his son he was going to lose!
He really did try everything he could to get his son to some clinical trials, as it was likely his best chance of either beating it or at least getting longer then he would have without any treatment, but he got turned down at every turn.
“I was a medic in the war, you know, and you fix things …And this was something I couldn’t even touch.”
There and then he made a promise to himself:
If he was not able to cure his son’s disease then he would at least do everything in his power to make the time he had left as meaningful and enjoyable as he could.
He met WWE wrestling stars, spent time chatting to celebrity chef Guy Fieri using FaceTime, he hunting in the woods with his dad, and joined team members of the York Generals, a semi-professional football team to help them with a fundraiser.
His mother said:
“We looked at the day, and we looked at how we could make that day the best we could …Every day.”
There came the times when it was all becoming too much for him and he just couldn’t even walk, eat or even breathe very well… such sad times, but he manages to do so much!
He then said the words to his father, his father hoped he would never have to hear those words from his son:
“Dad, I gotta quit!”
His dad answered his son, but there was only one way he could find the strength to do it, he said:
“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 OK to quit.”
Ayden fought hard and carried on, for seven months and seven days from the time he had his diagnosis, his fight was over, he had only one final request:
He said in the end:
“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.”
Ayden has passed away sadly, but his legacy lives on, donation made in his name to the Johns Hopkins Kimmel Cancer Center continue to pay for the much-needed research against DIPG!
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