Justin Knight loved superheroes. The Port Alberni man lived in his own version of the Marvel Universe, with a personal mantra of “live fast, stay strong, be wise,” and he lived his life for his family.
Now, his family is living for Justin’s legacy.
Justin died of cancer on a Saturday evening in June, after entering hospital two days earlier with complications from a tumour in his chest. He was 37 years old. This was his second go-round with cancer: he had used his superhero attitude to help him kick rhabdomyosarcoma when he was not quite eight years old.
He lived with the physical and emotional challenges from that treatment (the cancer had been discovered on the side of his head when he was five) every day for nearly 30 years, but his parents, Tricia and Edwin Knight, said he always put his family before himself: he was compassionate, caring; “warm, and kind and hilarious,” says his sister, Anita Webb of Saskatoon (Justin also leaves behind another sister, Jenny Rose of Parksville and a brother, Sean Knight of Chilliwack).
Justin loved costumes, where he could really let his personality come through: he was known in the Alberni Valley as Helix, a bright orange Bobtail Mountain Lion mascot. He often appeared at events such as Port Alberni Toy Run as Helix, and in recent years as Deadpool—one of his Marvel heroes.
Two years ago, Justin noticed a suspicious spot on his tongue, and his parents took him to an ear, nose and throat (ENT) specialist. After a new diagnosis of cancer, Tricia and Edwin were horrified to discover the chemotherapy cocktail oncologists were suggesting for Justin was the same as it had been 32 years earlier.
They decided to look for a better solution, including research in Belgium as well as the United States—where a Vancouver-based oncologist had told them about a test the family could have done on a sample of Justin’s tumour to discern the best course of treatment. The only problem was the test cost $9,000, and if immunotherapy treatment was recommended, it could cost them up to $12,000 per month.
A course of treatment came too late for Justin, though: he died a few days before he was to have surgery in Vancouver that his family had hoped would help prolong his life.
The Knights feel if they had more information about treatment options earlier in Justin’s cancer journey, he might still be with them. “It’s grossly unfair for the population to go about these treatments and go into these with a positive outlook of success without being armed with all the information,” his brother Sean said.
The family is putting together a foundation to help pay for the costly test so other families don’t have to go through what they did with Justin. They also want to raise awareness about this kind of testing and treatment, so other families in their situation can make informed decisions.
The BC Cancer Agency is slowly accepting genetic testing as standard care for cancer patients, but health coverage is not a given. There are genetic tests being used in B.C. for some cancers, according to the BCCA, and labs in Vancouver that can perform the tests.
The Knights want to raise enough money to ensure people who want to have the DNA-level cell engineered test and immunotherapy will be able to afford it.
“This test isn’t accessible to many people,” Edwin said. “This is one of our biggest concerns for putting this foundation together. At least they should be able to see all the possibilities.”
“Knowledge is power,” said Tricia. “The most ineffective, unhelpful, stressful feeling I have had over the last two years is ‘how can I fix this? How can I get a better answer?’. Give me a road to travel.”
The Knights have started a GoFundMe page called “Justin’s Immunotherapy Foundation”, and people can find out more information on the campaign as well as donate at the following page: https://www.gofundme.com/Justin-s-Foundation?donorname=Gary+Knight.
