Doing justice to Kayge’s story is more difficult than fully conveying the size of the Himalaya’s, the amount of water in the oceans, or the vastness of the universe.  Impossible to the most accomplished writer, and I am not a writer.  What I can say, is that if what is written here touches your heart even slightly, know that I’ve barely scratched the surface of Kayge.

Kayge held such a special energy that was immediately felt when he was in the room.  His mischievous grin and contagious giggle were near constant.  Kayge, above all, LOVED spending time with his family.

At the tender young age of 5, while being pushed on a swing by his mom (Mandy), Kayge suddenly developed a major droop on one side of his face.  He was rushed to the hospital, where he was initially diagnosed with Bell’s Palsy.  Mandy pleaded with the doctors to investigate further and to have an MRI done, to no avail.  What followed would be a landslide of a parent’s worst nightmares.

We battled this diagnosis for about 2 weeks, seeking 2nd opinions, and further testing.  We kept being told that Kayge had Bell’s Palsy.  After a bike ride, Kayge fell a couple of times while running across the grass to give me a hug.  I vividly remember Mandy and I looking at each other with mutual fear.  We tried to write this off as normal child clumsiness, but in our hearts, I think we knew something was wrong.

A couple of days later we got a call from Kayge’s kindergarten teacher.  She said that Kayge was falling repeatedly, and she was worried about him.  I will always remember telling one of my staff members “Something is wrong with Kayge, I have to go!”.  We again rushed Kayge to the hospital, this time he was displaying other neurological symptoms, and we were told rather quickly that he required an MRI. 

We pretended not to be scared.  We laughed and joked with him, and did our best to play off the MRI like it was no big deal.    

Then we waited….   

Mandy and I waited for what seemed like days while Kayge was having that MRI, we could feel the most searing fear, pounding away, with every single heartbeat.  The doctor finally delivered the news that would start the most terrifying nightmare imaginable - there was a mass on Kayge’s brainstem, and that we needed to be flown to SickKids in Toronto as soon as possible to meet with the neuro-oncology team.

Panic, heartbreak, terror, anger, confusion, denial.  I remember saying “Oncology??  A tumor doesn’t necessarily mean cancer, right?”.  The doctor agreed, not all tumors mean cancer. We clung to this strand of hope in that moment.

Only one parent would be allowed to fly with Kayge in the air ambulance.  We made the decision that I would take the soonest commercial flight and meet Mandy and Kayge at the hospital.  While at Best Buy picking buying Kayge DVD’s and games.   It was there, that Mandy called me sobbing.  She delivered the news that I thought was the worst news in the world, “Babe, the doctors said based on the MRI, it’s almost 100% cancer”. That was all I absorbed.  I crumbled to the floor in the middle of Best Buy.  This can’t be happening to our perfect boy.

Kayge and Mandy arrived at Sick Kids, where we had a little bit of time with him, we faked smiles, forced laughter, and acted not scared.  Little did we know, faking smiles, forcing laughter, and acting not scared, were about to become a staple of our parenting. We would later learn more details. 

Doctors told us:

“Your son has a cancerous brain tumour,  
it’s inoperable, incurable,  
there’s a 0% chance of survival.   
All we can do is radiation to temporarily relieve some symptoms,  
then you need to go home and make memories.   
We need to start immediately.”

Kayge had been diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), an incurable childhood cancer.  A disease that claims roughly 30-35 children per year in Canada and 300+ per year in the USA, as well as many more worldwide. Doing nothing was not an option for us. We had to try.

So we got to work: Endless researching, late night reading, phone calls to all over the world at all hours of the night.  When it comes to trying to save your child, there is nothing you won’t do.

We started fundraising, we went public, we got loud. More phone calls, more emails, more research, more reading, more doctors. We found some treatment hope in Mexico, medicinal hope in Germany, technology in California.

In the meantime, within a few days of radiation, Kayge had become paralyzed on his left side especially, lost the ability to walk, lost the ability to talk, and mostly lost the ability to swallow. This is all within days of diagnosis. From normal, to almost paralyzed, barely able to eat, and unable to communicate. We almost lost Kayge 2-3 times in this period to choking alone.  We had to thicken his fluids and cut his food into tiny pieces. The next few months, Kayge would go on to inspire us with his positivity and fighting spirit. This little boy FOUGHT.,He worked.

All of this with a smile and never a “why me”.

He taught himself how to hold a pencil again, learned how to write and draw again, regained the ability to talk, and put in a huge amount of work to walk again.

My son is my all-time hero. A person that I admire and look up to. These months were FULL of heartbreak and challenges but watching him fight was the most inspiring thing I will ever experience. For 6 months after that we made progress on his disease, we had developed our own treatment plan utilizing all our resources from around the world, and saw his tumour shrink significantly, slowly seeing more and more improvement. Unfortunately, DIPG has an unbeaten winning streak, and treatments come with risks. 10.5 months after diagnosis Kayge developed meningitis, which to treat, meant his other treatments ceased. It was the complications of the infection, as well as the now untreated DIPG, that eventually took him from us.

Being Kayge’s mommy and daddy is the honour of our lives. Kayge passed away in mommy and daddy’s arms just over a year after being diagnosed. He came into this world surrounded by our love, and he left it in the same way.

Kayge inspired thousands of people through his journey and continues to be an inspiration to many.  He arrived home in Sault Ste Marie to a hero’s welcome, the likes of which I have never seen.

Forever our Little Bear
Forever our HERO
Forever 6

#PowerofKaye #PowerofNine #PartOne #DIPG #pediatricbraincancer #KaygeFowler #foreversix #littlebear #hero