After terminal diagnosis, this Hamiltonian is focusing on love, bucket lists and living fully in 2026

According to Cole DeLargie-Campbell, being diagnosed with a terminal disease has been both deeply sad and a “blessing in disguise.”

“How often do you get to plan your death?” they asked.

Four years ago, when they were 34, doctors discovered a brain tumour in DeLargie-Campbell. This fall, they were told they had a terminal brain disease and had somewhere between a few months and two years to live.

The first thing that came to their mind, they told CBC Hamilton in December, was their wife, Kaila DeLargie-Campbell.

The pair married in 2021 and have been together for 13 years.

It was shortly after they said “in sickness and in health” that DeLargie-Campbell was diagnosed with a meningioma — a tumour that is typically slow-growing out of the lining of the brain and spine.

After a “rollercoaster” of emotions, several surgeries, complications and hospital stays, DeLargie-Campbell was told in late November the news that the tumour, which they named “Brian,” was a “permanent resident” in their head.

Now, as the new year begins, they’re focusing on the time they have, writing journals and bucket lists. They wish for as much time as possible so they can reach their 40th birthday, renew their vows with Kaila and play Grand Theft Auto VI when it comes out in November.

DeLargie-Campbell’s tumour has rendered them unable to drive and work, so their friends set up an online fundraising campaign via GoFundMe to get them and their wife the time they have left together.

What becomes important?

DeLargie-Campbell has taken the news of their impending death with strength and a dark sense of humour, but when getting the news, they just felt sadness.

“I feel like I’m still in the honeymoon phase with my wife, she’s just the most amazing person and I’m not ready to go,” DeLargie-Campbell said, speaking in their living room in Hamilton’s Stinson neighbourhood one cold afternoon.

As a cat person, they’re mourning not seeing their cats get older, or the new cat they were talking about getting.

DeLargie-Campbell is also mourning the life they wanted to live with their wife, and the hole they’ll leave once they’re gone.

“She’ll be widowed, she’ll always have a high standard,” they said, holding back tears. “She doesn’t want to talk about this, but my urn [and our] collection of stuff will always be out.”

“The next person, which she doesn’t want to talk about … will know how much she loved me.”

Now they’ve come to appreciate a mix of the most important and the “stupid” things in life, like listening to new music and watching new TV shows.

Things DeLargie-Campbell used to care a lot about, like stepping out of their comfort zone, are not as important, they said.

“I used to care a lot about putting myself in situations that make me uncomfortable, [like] travelling to places I wouldn’t usually travel, and 1767315021 all I want to do is go to the place in Cuba that I’ve been to three times,” said DeLargie-Campbell.

Seeing Canada and playing video game on their bucket list

DeLargie-Campbell’s bucket list — what they’d like to do in the time they have left — is long. It includes a lot of firsts, like going go-karting, seeing a monster-truck show, seeing Canada by VIA Rail, and playing Grand Theft Auto VI.

The highly anticipated video game is part of a best-selling franchise and its release has been delayed several times now.

“I’ve played GTA since it came out and it was always my favourite game,” DeLargie-Campbell said.

“I swear I’m not going to die before that release,” they said, adding their radiologist told them they’ll “throw everything” at the tumour so DeLargie-Campbell can make it to November.

DeLargie-Campbell also wants to continue to enjoy things they love, like going on one last trip to Cuba, spending time with their friends and family, and remarrying the love of their life.

Shortly after their wedding in 2021, DeLargie-Campbell transitioned as a non-binary person, started taking testosterone and got top surgery. Now, they want a chance to marry their wife as the person they are now, Cole.

“I wish I got to enjoy more life as this person … because when you know, you know,” they said.

“Basically, I want to experience life,” DeLargie-Campbell said.

A rare diagnosis

DeLargie-Campbell’s Grade 3 meningioma, the highest grade, is a rare diagnosis, according to Dr. Jeffrey Greenspoon, a radiation oncologist at the Juravinski Cancer Centre.

“The vast majority of [meningiomas], over 75 per cent, are Grade 1 or slow growing,” he told CBC Hamilton. These can usually be removed fully.

Greenspoon said there’s nothing people can do to prevent meningioma, but there are some symptoms to look out for, such as constant headaches, struggling with balance, and seizures.

Looking back, the warning signs stretched back years for DeLargie-Campbell. They experienced twitching, trouble with coordination, missing objects when reaching for them and having difficulty finding words.

It wasn’t until they had a concussion in 2022 that symptoms worsened, they started seeing light prisms, struggled to speak, and lost the ability to form sentences in their head.

Greenspoon said it is common for meningiomas to be discovered incidentally after different checkups.

He said at his practice in Hamilton, only five per cent or less of people with meningiomas will have a Grade 3 form.

“When I talk to a patient with a Grade 3 meningioma, I describe them very much as a malignant cancer, like the very serious cancers that people have,” said Greenspoon.

“They are very, very life threatening.”

In November, DeLargie-Campbell was first given 10 years, then two. Then, when they told their radiologist of their plans to renew vows next August, they were told they might have to move them up.

“[That] is not good news,” they said.

‘You never know when it’s your time’

DeLargie-Campbell still has one more MRI in March to determine whether they have a few more months or, best case scenario, two more years, but they’re determined to live to the fullest no matter what.

They talk openly about being in denial, their grief, and trying to meet the future with grace instead of anger.

“I don’t want to leave this world. I’m stubborn about it.”

They also want this opportunity to raise awareness about meningiomas and the importance of getting checked when something feels wrong.

“I don’t want this to happen to anybody else,” they said.

“Advocate for yourself,” they said, recalling how they once received a “quick neuro exam” and were sent home despite having serious symptoms.

DeLargie-Campbell also wants to be a reminder that everyone should “live every day like it’s a gift.”

“Do all your firsts, get them out of the way, create a bucket list for your life because you never know when it’s your time,” said DeLargie-Campbell.