A young boy wearing a bike helmet is touching noses with a large black and brown dog outside in a park or backyard.

Fynn

Cox

Fynn Cox was born into this world at 10:57am on July 29th, 2009.  Weighing 6lbs 2oz and sporting a full head of black hair! Fynn was smarter and wiser than anyone could understand and he loved life, eating pizza and ice cream, riding bikes, skiing, listening to music and reading books.

Fynn taught us to be patient, in the moment, and to listen.

He is greatly loved and missed by his family and many in the community.

In 2018, we had the honor of riding for Fynn Cox

He was welcomed home by his older brother, Wyatt and our Bernese Mtn. dog, Argus.  Fynn was a sweet, happy, snuggly baby.

Two cheerful boys sitting on a beige sofa, one wearing a green shirt and the other shirtless with a Batman beanie, smiling at the camera.
A young boy sleeping peacefully in bed with a Batman pillow, covered with a tan blanket, surrounded by pillows and a colorful knitted blanket.
A young boy with blonde hair and a blue and gray striped shirt sleeping on a black and white Bernese Mountain Dog on a wooden floor in a cozy living room.

On December 11th, 2016, Fynn was at home, happy as can be – roaming the house, playing with his favorite toys, listening to music, riding
his bike – doing all the normal things that he loves to do.  Since he had to have anesthesia the next morning and would not be able to eat breakfast, we made him his favorite meal, Spaghetti. We read him his social story that illustrated the events of the next day.


The news:  Fynn has DIPG – Diffuse Intrinsic Pontine Glioma – effectively a stage 4 incurable cancer that affects some 2-300 kids in America every year. 

Fynn passed away on April 9, 2017.

He is forever loved and deeply missed.

On December 19, 2016  a week after his brain biopsy, Fynn was diagnosed with a rare brain tumor known as DIPG.  This stands for Diffuse Intrinsic Pontine Glioma.  Effectively a stage 4, incurable cancer with the lowest survival rate of all pediatric cancers.  DIPG affects 2-300 kids each year and has a 5 year survival rate of <1%.  The median overall survival of kids diagnosed with DIPG is approximately 9 months with radiation and 4 to 6 months without.

In addition to DIPG, he was born with Dup15q, a rare genetic disorder related to Autism.   This is a duplication of the 15th chromosome in every cell of his body – an irreversible and incurable condition.

Sixteen days after he was born, Fynn developed a mild fever.  Just to be on the safe side, we brought him to our pediatrician to make sure everything was okay.  By the time we reached the office, Fynn’s temperature was over 101 and he was promptly admitted into Lutheran Hospital.  Within the hour he had endured his first spinal tap and was checked into a room where we ended up staying 5 days as we waited for test results.  It was confirmed that Fynn had contracted viral meningitis. 

Fynn’s Diagnosis

When Fynn was 2 years old, he was diagnosed with Autism.  We learned that many children diagnosed with Dup15q are also diagnosed with Autism.

And his life journey began… with elements of fear and reaching to understand and make peace with the cards Fynn was dealt.  We began therapies and what seemed like endless doctor’s appointments. Fynn was always a trooper…always happy.

We continued to watch the “lesion” on his brain every 3 months, then 6 months, then every year, and lastly we were up to every other year.  Since the lesion was not growing, there was no need to keep as close a pulse on it and it saved Fynn the experience of being anesthetized.  Then, (after 2 years) the next MRI in May 2016 showed that the lesion in his cerebellum was still stable, but a new lesion was now visible, this one in the pons area of his brain.  Again, the advice was to do nothing and wait 3 months for another MRI.  On July 28th, the next MRI showed  growth, but it didn’t “look” or “act” like a typical cancerous tumor- -Fynn showed none of the expected symptoms.  The medical team thought it could be something caused by an unknown inflammatory process, so we embarked on more blood tests and another spinal tap.  The tests revealed nothing conclusive.  He did not have MS, or leukemia so we were thankful for that, but we were still left not knowing what the lesion actually was, so we again waited to do another MRI scan in November.  This scan showed that the lesion had doubled from May and was now 24mm in size.  At that point, it was recommended that we do a biopsy. 

Happy woman helping young boy put on a helmet on a snowy ski slope with mountain and ski lift in the background.
Family of four smiling outdoors in snowy mountain landscape, wearing winter gear and sunglasses.
A woman with short brown hair, wearing sunglasses and a black jacket, smiling while carrying a young boy on her back along a dirt trail in a grassy field with trees in the background.
A family of four with bicycles standing on a paved trail in an open field with mountains in the background, cloudy sky overhead.
A young boy with blond hair sits by a black textured surface, looking to his left. He's wearing a white and black raglan shirt with a graphic of a lion's face and the words "Start of a Lion."
A man riding a yellow mountain bike with a small child in a bike trailer on a forest trail.
A family of four, all wearing matching blue shirts with the number 15, walking in a grassy field with a black dog, with large mountainous rock formations in the background.
Two children dressed in superhero costumes, one as Batman and the other as Captain America, posing inside a home with wooden floors and windows in the background.
A young boy wearing a helmet riding a small black and red bike on a concrete surface, with a black dog walking in the background near a hockey net.
A smiling young boy leaning over a wooden railing outdoors on a sunny day, with trees and grass in the background.
A smiling young boy with blond hair standing outdoors in front of a birch tree, with autumn foliage in the background.
A man and a child dressed in winter gear, wearing helmets and goggles, taking a selfie outdoors in a snowy area.
Cyclists participating in a parade or event, with crowd and vendor tents in the background. One cyclist is wearing a yellow tutu and striped socks, smiling. Another cyclist is wearing sunglasses and a striped shirt.
A woman and boy smiling and hugging outdoors at a festival or race event, wearing medals around their necks, with a yellow tent and mountain scenery in the background.
A boy riding a bicycle in front of a crowd at an outdoor event with vendor tents, including a beer tent and a brewing company booth. The crowd includes children and adults, some holding signs and banners. The atmosphere is sunny and lively.
Child wearing a yellow and black helmet, sunglasses, and an orange shirt riding a black bicycle at a cycling event in a city with residential buildings and event banners in the background.
A family of three standing in front of a large window showing a sunset sky. The woman on the left holds a doll, the boy in the middle is wearing a blue t-shirt with white text and has a name tag reading Wyatt Cox, and the man on the right is wearing
A young boy with face paint resembling a wolf, wearing sports clothes, stands behind a black chain barrier at an outdoor event, holding a small object in his hands. Behind him, a woman in shorts and a patterned shirt is also near the barrier. There a
A logo for Fynn Fighters features gray and green colors, with stylized wings on either side of a circular emblem containing the initials "TF" and the number "16." The words "Fynn" and "Fighters" are written above and below the emblem.

The Fynn Fighters

In 2017, Fynn’s family and friends joined Wheels planning on riding with Fynn. They were committed to making the most out of their time and contributing to the search for a cure for DIPG. We were not able to ride with Fynn, but we all rode for him in 2018.