By Tara Tosh Kennedy –
A Nepean High School student with a passion for social justice and LGBTQ issues is hoping to celebrate the likely end of his brain cancer treatment with what he calls the “trip of a lifetime.”
Raffi Meyer-Wertman knew something was wrong when he developed an insatiable thirst last winter. He was drinking up to 20 litres of water a day, often a sign of having diabetes insipidus (DI).
But when the other usual traits for DI didn’t show up (there was no hormone deficiency, nor kidney problems), the 17-year-old’s doctor sent him for an MRI at CHEO. After the scan, Raffi and his parents had only made it to the parking lot before they got a call to go back inside.
He had two brain tumors, one of which was pressing on his optic nerve and making his vision blurry when he stood up (an issue the teen hadn’t given a second thought). The second, smaller tumor was giving him diabetic traits.
“It was pretty shocking,” says Raffi, who is on-track to graduate with his friends despite his illness. “Part of me thinks I never digested it fully.”
Two weeks after the MRI, he had a biopsy, confirming the diagnosis of germinoma – a germ-cell tumor that isn’t always cancerous. In Raffi’s case, it was.
“You’re kind of in an altered state,” says Paul Wertman, Raffi’s father, about getting the news. “But Raffi’s first question was ‘Can I still go to camp?’”
For a decade, Raffi has attended Camp Gesher, a small summer camp near Bon Echo that he loves deeply for its connection to his Jewish faith and its focus on social justice and youth empowerment. He returned this year between the end of chemotherapy and the beginning of radiation treatments.
It’s difficult to picture the sociable, well-spoken teen hooked up to an IV bag or feeling exhausted and nauseous. He is unusually clear about his life’s purpose: making a difference in the world. “It’s how I was raised,” he says with a shrug. Raffi’s father works with the Cree Nation in northern Quebec. His mother, Michelle, has been involved for decades in the women’s movement and has worked to have naturopathic medicine covered by OHIP. Raffi himself is already making change: during his co-op placement in Grade 11, he spent three months at the Canadian Centre for Gender and Sexual Diversity and presented workshops on gender diversity and rights.
Raffi’s sense of spirituality increased during his cancer treatment, and it’s a path he would like to investigate more. He’s hoping to go to Israel in September for nine months to attend a program simply called “Workshop” and run by Habonim Dror, the same movement that oversees his beloved summer camp. He will spend some of the time living on a Kibbutz and is excited to experience living in a modern example of socialism.
“This program not only will give me the tools that I need to explore myself on a deeper level, but will also be a personal celebration of my battle and the overall winning of my life’s biggest challenge,” Raffi writes on his GoFundMe page.
Raffi only told his parents he was raising money online for his trip after his GoFundMe page was in place. “He won’t let me donate – not even anonymously,” says Paul, who acknowledges that the family’s finances have become stretched because of expenses incurred during Raffi’s treatment.
As of the end of October, Raffi’s page has raised close to two-thirds of his $15,000 goal.
The teen’s neurosurgeon is optimistic the next MRI will be a reason to celebrate. Raffi has already marked the likely end of his cancer treatment with a lion tattoo on the inside of his right arm. The edgy, geometric design was created by one of his cherished camp friends and represents his middle name – Ari – and his fighting spirit.
“The larger tumor was just a dot on his last MRI when his treatment finished,” says Paul. “We’re hopeful. And Raffi’s been amazing through all of it.”
To contribute to Raffi’s trip, go to his page on gofundme.com.
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This feature is brought to you in part by Catherine McKenna, MP Ottawa Centre.