Ben’s Big Legacy

Imagine being a parent to a critically ill child. There’s a therapy out there that could improve the child’s condition, but it’s not available to you.

Sadly, it’s something that befell Ben Stelter and his family.

Ben is well known to Edmontonians. Before passing away from brain cancer at the age of six, his friendship with many of the Edmonton Oilers became the stuff of legend. He was a fixture at games. He would not allow cancer to interfere with his passion for the team that he loved with all his heart.

But, Ben’s mom and dad, Lea and Mike, knew there was new cancer-fighting technology out there — proton therapy — that could have helped their son.

“It would have benefitted Ben, but it wasn’t available to him at the time,” says Mike. “Canada is currently the only G8 country that doesn’t have proton therapy available, which was shocking for us to figure out.”

The Ben Stelter Foundation, aimed to help kids with cancer, was founded in his memory. And, one of the key initiatives is to raise the funds needed to bring proton therapy to Edmonton. It’s a project that will cost just under $150 million. The Ben Stelter Foundation has partnered with Edmonton Community Foundation (ECF) to establish an endowment fund to support the project and help with the fundraising efforts.

It’s a fitting legacy for Ben, who, despite having to fight a terrible fight at such a tender age, often put others ahead of himself.

“Ben had such a big heart,” recalls Mike. “He was always more concerned about other people in the hospital, other kids, and wanting to make sure they were being taken care of. He wanted to do things like take his own money to buy things for the treasure chest at the hospital, so when a child was getting a needle or doing hard that day, they got to go to the treasure box. He wanted to make sure there was something cool for them there.”

A cruel twist

Mike was meeting with partners, WestCan Proton Therapy and Edmonton Global, in 2023, to discuss the best ways to raise the funds needed to bring the cancer-fighting technology here. And, then fate intervened in the cruelest of ways.

In April of 2023, Mike was diagnosed with cancer. He had a tumour pushing against his spine. The best course of treatment? Proton therapy. He was sent to the United States.

“I got to see firsthand why it’s so important for us to have it here.”

Lea couldn’t be with him the whole time, so Mike had to spend some of the time in the U.S. without family nearby. There was the paperwork to get him over. And, even though Alberta Health covered the costs of the treatment and flights, all other costs were left up to the patient.

Mike says he knows of parents who have had to say no to the therapy because of the travel costs required — and that could be solved if it was available locally.

Ashif Mawji, the chair of the Ben Stelter Foundation, says the board has learned that proton therapy could be the best option for kids with cancer, but, sadly, because it can’t be found in Canada, many families have to say no.

“It’s not the treatment for them because the family has to uproot and go somewhere for eight weeks. You can’t uproot a family on a whim.”

What is proton Therapy?

So, what is proton therapy? It’s a beam of cancer-killing radiation that is so fine, so precise, that it doesn’t harm the nearby tissues and organs.

For brain cancer, or a tumour that touches the spine, the accuracy of the treatment is so vital. It means the healthy areas can be left alone. We are coming a long way from traditional radiation therapy, where the hope is that the treatment kills the cancer before it kills the patient.

“Kids are obviously a lot more resilient,” says Mawji. “If you get this early on and you are precise in the treatment, the chances of survival, of eradicating cancer in the body, are immense. So this is a must-have.”

In proton therapy, there is little or no “exit dose” of radiation. The charged particles go into the tumour and stop there. They only release their energy where treatment is needed.

Mawji says the plan is to have the facility opened by the final quarter of 2027, or early in 2028. A site has been identified that’s near the University of Alberta, so patients can have easy travel between the Stollery Children’s Hospital, the Cross Cancer Institute and the new clinic.

The plan is for the Edmonton site to be the first of a series of proton therapy clinics named after Ben Stelter. After the Edmonton facility is opened, the focus will be on bringing the therapy to Ontario, Quebec and southern Alberta. The Edmonton site should be able to handle 400-450 patients per year.

The Edmonton facility will also double as a “best-in-class” research facility, promises Mawji, with partnerships with the Alberta Machine Intelligence Institute, the University of Alberta and the University of Pennsylvania, which is the global leader in proton-therapy medicine.

Canadian Gordon Baltzer is the chairman and CEO of WestCan, which is based in Florida, and he’s bullish about the chance to bring this life-saving technology back to his home country. He has been working with NHL Hall of Fame defenceman Denis Potvin, who worked in the Florida Panthers organization before settling into retirement, on the push to bring proton therapy to Canada.

“One of the things I talked to Denis about was that if a project in Canada is going to occur, and it’s going to be effective, sustainable and meet the needs of the community, it’s got to be community-based,” said Baltzer. “I told Denis that you led the Islanders against Gretzky’s Oilers for hockey supremacy in the ‘80s. Why don’t we look at bringing the hockey world together in battling a common foe in cancer?”

“We’re both Canadians and had a passion for trying to make something happen.”

Edmonton Global’s reps introduced Baltzer to the Ben Stelter Foundation, and the Edmonton Oilers Community Foundation also got involved.

“We didn’t want to just bring this therapy to Canada, we want to lead,” says Baltzer.

Brain-cancer patients that are treated with traditional radiation therapy can suffer complications such as decreased cognitive and motor functions.

“This will allow us to spare that — and make sure their function and quality of life going forward is optimal,” says Baltzer. “Right now, it’s devastating that we see people suffer who don’t need to suffer, or who could be significantly helped.

I think we’re in a Renaissance of cancer care. It used to be that a cancer diagnosis was one of the most gut-wrenching things a patient could be given. Today, it’s not that — there are so many effective therapies, and we can make it something you can treat and live with, but don’t succumb to. And proton is a big part of that.”