Ed and Baylen's story

How your support helped one father to be "always there" for his 13-year-old son

It was a Thursday night in December of 2018. Ed was sleeping soundly when his 13-year-old son, Baylen, woke him. Something was wrong.

The headaches that had been plaguing Baylen for months had become unbearable. Tonight’s was the worst one Baylen had ever experienced, so they left for the hospital immediately. The next 24 hours were some of the most intense the family could’ve imagined. 

A critical diagnosis

After preliminary tests, doctors found a tumour in the middle of his brain.  The tumor was the size of a ping pong ball and was causing a build up of spinal fluid. The fluid couldn’t drain, so the build up kept getting bigger and bigger, resulting in the intense headaches he had been experiencing. The doctors later found out it was Stage 4 Pineoblastoma – a fast-growing malignant tumor in his brain.

The diagnosis was critical. The doctors were monitoring Baylen throughout the night, just to make sure he was still alive, as they waited for emergency surgery to drain the fluid the next day. Ed remembers that surgery as the worst five and a half hours of his life, thinking “This isn’t supposed to happen to him. He’s 13-years-old – so innocent.”

When he was 13 years old, Baylen was diagnosed with Stage 4 Pineoblastoma

Baylen was admitted to the hospital on December 5, 2018, where he awaited emergency surgery the next day. 

The long road ahead

Once the immediate threat was resolved, Baylen still had a long road ahead of him. He had another surgery a month later to fully remove the tumor, followed by 31 daily rounds of radiation the next month and high dose chemotherapy over the next several months.

But the whole time, Baylen maintained a positive, optimistic attitude.

“Everyone’s trying their hardest and whatever happens, happens,” he says. ”That’s my saying for everything: whatever happens, happens. If you try your hardest and you don’t do so well, then you still tried your hardest. There’s nothing better you can do.”

During the crisis, Ed and Rayna, Baylen’s mother, did everything they could to make sure Baylen always had a caregiver by his side.

For Ed, this meant reducing hours at work so that he could be at the hospital, which in turn, reduced his income, and the expenses started to pile up. “I’m at my wit’s end trying to save the house and have a home for Baylen,” he recalls.

That’s when the support of Helping Families Handle Cancer came in.

A weight off the shoulders

Ed remembers the first time he learned HFHC would be helping him cover a mortgage payment, after speaking with a social worker at the hospital about options for financial assistance.

“That was such a huge weight lifted off my shoulders. I just started getting really emotional and I probably cried.” 

He laughs quietly as he remembers. Ed was able to benefit from additional mortgage payment relief and hospital parking passes during Baylen’s treatment to allow him to focus on his family and Baylen’s recovery.

On August 26, 2019, after nine months, Baylen received his last chemotherapy treatment and was cleared just in time for his first day of Grade 9. 

Baylen’s treatment ended and he was cleared just in time for his first day of Grade 9.

“This experience has made him even more optimistic,” Ed says. “It’s almost like a blessing in disguise. Every time we took a picture of him during his battle, he always had his thumbs up.”

Beyond the diagnosis

Baylen spoke in front of his school about his experience on behalf of the Terry Fox Run, and that year, he saw multiple stickers on the wall of that year’s event – “I’m running for Baylen.”

“So many people have said, ‘You’re so strong. I can’t believe you went through that,” he remembers. “And I’m like, I don’t know. I was just myself. I have nothing to hide. It’s just me and what I went through. Everyone has scars. Mine’s just visible.”

Today, Baylen is thriving. He’s 18 years old and excelling in Business Analytics at the University of Calgary. He ventured out to live in residence for the true university experience, including regular karaoke nights, where his go-to song  to get everyone dancing is “Call me Maybe.”

Ed and Baylen celebrating his high school graduation

Ed and Baylen celebrate his graduation from Robert Thirsk High School in 2023.

August 26, 2024 will mark 5 years since Baylen was officially declared in remission. It’s a day both father and son look forward to celebrating.

They are both so thankful for HFHC and all its donors, that they are looking for ways to give back – whether it’s participating in a fundraiser, speaking at an event, or sharing their story. They know how meaningful the support is for other families experiencing cancer diagnoses.

“Helping Families really helped me support Baylen to be as optimistic as he is,” Ed says of the support. “If they weren’t there, who knows how he could have turned out. He could have been miserable. We were always there. Somebody was always there with him.

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