“More Awareness Would Be a Great Leap Forward” Trevor’s Story

When he headed out for a touch football game in mid-September 2010, being diagnosed with a serious illness was the furthest thing from 24-year-old Trevor Harrison’s mind. After experiencing a seizure on the field, he was rushed to the emergency room of the general campus of Ottawa Hospital. Before long he was being told he needed surgery to remove a mass on his brain.

This unexpected diagnosis led to an immediate leave from his demanding Ottawa job as a political staffer on Parliament Hill. Surgery was scheduled for the end of September. It was during that time that Trevor learned that October is Brain Tumour Awareness Month in Canada.

He realized that with his connections on Parliament Hill he could raise critical awareness with the government. A few phone calls later, a statement was read by Rodger Cuzner, a friend and an MP from Cape Breton, in the House of Commons. Trevor was in the gallery for the reading. “When it was done, Liberal MPs stood and applauded. It was overwhelming and extraordinary.”

Following that important effort, Trevor focused on recovering from his surgery where a walnut-sized amount of tumour was removed from his brain. The remaining tumour was about 2.5cm by 2.5cm. A week after the surgery, Trevor returned to the hospital for, “the weird experience of having staples removed from my head.” As he lay on the table with a nurse focused on the task, Trevor’s surgeon happened to walk by, He said, ‘Give me a second, I have your pathology’.” Up until this point, Trevor and his family were not sure what type of tumour they were dealing with.

While the surgeon had indicated that he thought the tumour was likely non-malignant, it was clear that he wasn’t positive, so the family waited for the pathology results. When the surgeon returned to the room where Trevor was laying, he confirmed the diagnosis, a stage-two brain tumour. Not malignant. “My mom certainly reacted,” Trevor recalls. “But in that moment, I was focused on the task the nurse was working on,” he laughs.

For the next year or so, Trevor concentrated on recovery, getting back to work and adjusting to the diagnosis of a brain tumour. “I wanted to get more involved with the issue, but I wanted to do it in my own time,” he explains. Due to Trevor’s earlier efforts to raise awareness in Ottawa and even though he was absent, in October 2011, an awareness statement was again read in the House of Commons, this time by MP Justin Trudeau.

Then in spring 2012, Trevor’s brother was inspired to start a Spring Sprint team in his honour. “It was more his thing than mine,” he recalls. But when Trevor attended the event he started to make connections with others and he began thinking about getting more involved. That October, Trevor travelled from Ottawa to London for the annual Brain Tumour Information Day event.

“It was a great, eye-opening experience. I saw for the first time, the wide range of what people experience with this disease. Brain tumours really are a whole different world.”

 Trevor and his touch football team in 2010

When he left London that day, Trevor’s efforts began anew. Within just a couple of days, there were two awareness statements read in the House of Commons, again marking Brain Tumour Awareness Month. The focus of the statements read by MP Hedy Fry and MP Malcolm Allen was on the importance of counting every brain tumour in Canada. Accurate information about the number of brain tumour patients across Canada is critical to ensuring the best treatment and care, and to funding research.

Now Trevor is an active member of Brain Tumour Foundation of Canada’s advocacy committee, offering his time to advise on issues, provide insight into government processes and make suggestions for projects. He’s also dealing with an impending second surgery to remove more of the brain tumour. He admits that waiting for another surgical date is frustrating, “being in limbo waiting and then preparing for more recovery time isn’t what I want to be doing.” To get through the rollercoaster of treatment Trevor now leans on family, some “two generations away,” for support. “While I can do it alone, I don’t need to. We all need to lean on others,” he says, “even if it means leaning on people who are already leaning on walkers.”

When asked what he hopes can be achieved for brain tumour patients through advocacy efforts, Trevor explains, “We need to get into the minds of those in government. We need to make them aware that brain tumours can affect anyone. In order to make change we need them to know there needs to be more understanding of the disease and that they can help make advances. More awareness would be a great leap forward.”

With the help of people like Trevor, that is going to happen.

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