Thanksgiving Day in 2017 began as an ordinary day for the Gootjes family of Quispamsis, New Brunswick. After a hockey practice and a family dinner, their oldest daughter, Marissa, went to a friend’s house to watch a movie. Her mom, Jan, remembers suddenly getting several jumbled texts from Marissa, who asked to be picked up immediately.
Jan knew that something was terribly wrong.
Marissa’s dad, Jim, arrived just in time as she was experiencing a seizure. She was vomiting, aspirating and losing consciousness. Jim called an ambulance, which took Marissa to their local hospital’s emergency department in New Brunswick. There, she was admitted to the Intensive Care Unit (ICU) and placed in an induced coma.
To Jan and Jim’s shock, the medical team was unsure if she would wake up. Just hours before, Marissa was a healthy and happy 14-year-old.
"It feels like a really bad dream,” said Jan when asked about that night. “It doesn't feel like something like that could happen to us.”
The following morning, Marissa regained semi-consciousness. “The first thing she asked was if she missed hockey tryouts,” Jan said with a laugh.
Soon after, Marrisa had an MRI to try and determine why she had a seizure. Unfortunately, the MRI gave the family terrifying news—there appeared to be a tumour on the left temporal lobe of Marissa’s brain, and they couldn’t yet confirm if it was malignant (cancerous). Marissa would need to be flown by air ambulance to the IWK.
On October 17, 2017, Marissa underwent an 11-hour surgery at the IWK to remove the brain tumour.
Thankfully, the surgery was a success. Jan described Marissa as “a fighter,” and the care team was amazed at her resilience. One day later, Marissa walked around the hospital and was asking when she could play hockey again. According to Jan, “Marissa takes things one day, one step at a time. I think that really worked in her favour."
Later that week, the pathology results came back and confirmed their worst fear. The brain tumour was cancerous. Marissa was diagnosed with glioblastoma, a fast-growing and aggressive brain tumour.
Glioblastoma has no cure; however, the IWK oncology team remained optimistic about treatment. Alongside chemotherapy and radiation, they provided more hope through a program IWK donors help support called PROFYLE (PRecision Oncology For Young PeopLE).
IWK Health is a proud member of PROFYLE, which brings together leaders from across Canada in pediatric cancer research, care and genetics to identify potential mutations and personalized cancer treatments for young Canadians with advanced cancers.
Today, four out of five children diagnosed with cancer will be cured. For the other 20 per cent, their cancers have spread, come back, or have proved resistant to treatment. The PROFYLE program is giving new hope to these young cancer patients with hard-to-cure cancers, like Marissa.
Early into her treatment, samples of Marissa’s tumour were sent for genetic testing through PROFYLE.
During this time, Marissa had a second surgery at the IWK and underwent 30 radiation treatments, targeting any malignant cells left behind. She also had five rounds of chemotherapy at home in New Brunswick. Throughout it all, Marissa was followed by the IWK and a local pediatric chemotherapy team. While she was often sick, she remained in good spirits. Above all, Marissa missed hockey and spending time with her friends and family. She missed the normalcy of being a teenager.
After 13 months of treatment, the Gootjes’ received the best news. Marissa was cancer free! Jan said that the IWK team shared that joy. “They were as happy as we were, which meant a lot. I know they were Team Marissa all the way."
PROFYLE offered even more encouragement. Before Marissa was in remission, researchers identified four genetic mutations in her tumour, along with a targeted treatment for one of these mutations. This could be used if her cancer was ever to reoccur. Ideally, Marissa will never have to use this treatment, but, as Jan explained, “It gives us extra hope, and there’s no price that can be put on that.”
A cancer diagnosis impacts the entire family, and Jan is focused on supporting other families impacted by hard-to-cure cancers. She has since joined the parental node of PROFYLE, working alongside a national group to create materials for parents and guardians of children in the program.
Nearly six years later, Marissa continues to be followed by the IWK. This past June, she visited the IWK’s Brain Tumour Clinic for an annual MRI, which showed no cancer reoccurrences. Jan is forever grateful for the IWK’s exceptional care. "The IWK saved Marrisa's life, and we owe them a huge debt, specifically to Drs. Crooks, Erker, Walling and McNeely. I don't know where we would be without them. They helped our family every step of the way.”
Today, Marissa is a happy and healthy 19-year-old studying early childhood education. She is a summer camp leader and a wonderful big sister who enjoys spending time with her dog. Thanks to on-ice physiotherapy, which helped build her strength as she learned to skate again, Marissa has also returned to her passion—hockey.
Like her mom, Marissa is eager to give back. She recently joined a research study looking at one of the genetic mutations—the H3G34 mutation—that contributed to her tumour. The hope is that the study will lead to a better understanding of the mutation and more treatment options.
There are challenges along the way, but the Gootjes family has proven to be resilient and closer than ever. They continue to embrace life to the fullest as they know it can change instantly.