N.B. mother honours her late son’s dying wish for a national brain tumour registry

A mother from Riverview, N.B., whose son died of a brain tumour is finally able to keep her promise.

The Brain Tumour Foundation of Canada launched a national brain tumour registry on Tuesday allowing Canadians with brain tumours to have their malignant and non-malignant tumours tracked, which will provide vital information for researchers to improve patient care.

“It’s like that weight has been lifted from my shoulders. I took that promise very seriously,” said Jennifer Gouchie-Terris who spearheaded the call for a national registry more than a decade ago with her son Bandon Dempsey.

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Gouchie-Terris said it was her son’s dying wish.

“It gave him hope during his good times and bad when he was sick and having treatment, but it also gave him a sense of hope when he was facing death.”

She said her son was diagnosed at the age of four and spent most of his young life battling a series of non-cancerous brain tumours that ultimately took his life at the age of 18.  Two weeks before he died, she said Brandon asked her to continue holding on to the cause.

“He said to me, mom promise me that you will keep fighting for the registry, that is how important it was to him,” said Gouchie-Terris.

Tweet This Click to share quote on Twitter: "He said to me, mom promise me that you will keep fighting for the registry, that is how important it was to him," said Gouchie-Terris.

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According to the Brain Tumour Foundation of Canada, brain tumours are the leading cause of cancer deaths in children under 20 in the country.

Gouchie-Terris said that non-cancerous brain tumors were not being properly tracked in Canada, which is limiting research opportunities.

“Non-malignant brain tumours weren’t being collected uniformly in Canada and in some provinces, not at all,” Gouchie-Terris said.

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She and her son fought to have a private members bill passed in parliament mandating the collection of data on all primary brain tumours back in 2007. But Gouchie-Terris said the process was stalled for years due to a lack of funding.

“How can we have good research and clinical trials without proper data?” she said.

Tweet This Click to share quote on Twitter: "How can we have good research and clinical trials without proper data?" she said.

The announcement of the new registry comes seven years after her son’s death. Gouchie-Terris said if her son was still alive he’d say “what he always said.”

“Way to go mom, I am proud of you.”