Access to precision therapy means a chance
to play hockey again

Diagnosis: Glioblastoma 
Age at Diagnosis: 14 years old
Clinical Trial: PROFYLE

Life took a dramatic turn for Marissa on Thanksgiving Day, 2017. Aged 14, she had just played her final field hockey game of the season. Her family enjoyed Thanksgiving dinner, and she was now at her friend's place watching a movie when she suddenly felt unwell.
 
Marissa texted her mother Jan and asked that she come pick her up. Her husband Jim was already on his way. Recalls Jan, “The texts suddenly turned to gibberish. That was frightening.” Her concerns were confirmed when Jim called to let her know their daughter was being transported by ambulance to the hospital because she suffered a grand mal seizure.
 
After an MRI scan was conducted, Marissa was airlifted from New Brunswick, the province where she and her family live, to the children’s hospital in Halifax, Nova Scotia. A mass was discovered in her brain requiring immediate surgery, which was conducted on October 17. “For us,” explains Jan, “that turned out to be a very significant date.” Gord Downie of the Tragically Hip died that day. Just a year and a half earlier, he was diagnosed with glioblastoma, which was the same cancer later discovered growing in Marissa’s brain.[1]
 
“My husband and I,” remarks Jan, “have long been fans of the Tragically Hip. My kids have grown up listening to the band’s music.” When Downie was first diagnosed, Marissa chose his most recent album, Secret Path, as the centrepiece for her heritage fair project. Secret Path tells the true story of a young Anishinaabe boy who died in 1966 while trying to return home after escaping from a residential school.
 
Despite his diagnosis, Downie toured across the country and used his music to help raise awareness of Indigenous issues.[2] Honouring his art, advocacy, and courage, Marissa opened her presentation by stating, “If you were told you had a terminal illness, and had only a short time to live, what would you do?” The morning after Marissa’s surgery to remove and biopsy the mass, her parents heard the news about Downie’s passing. “We felt,” says Jan, “that he went to be her guardian angel. It just seemed like such an uncanny coincidence.”
 
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As her mother describes it, Marissa was doing “awesome” after a nigh spent in ICU. By evening, she was walking around. Her neurosurgeon was amazed. The bad news, however, soon followed that Marissa’s growth was malignant.
 
Marissa immediately began receiving radiation treatments. Three weeks later, her oncologist approached her parents and said, “There's something exciting that I want to discuss.” The doctor was referring to Precision Oncology For Young People, or PROFYLE. This research project is transforming the way children and young adults with difficult-to-treat cancers are treated. Samples from their tumour undergo genetic analysis to identify specific molecular targets for therapy.
 
Cells from Marissa’s growth were sent away for genetic analysis. In the meantime, a second surgery was conducted to remove her tumour followed by more radiation to kill any malignant cells left behind.
 
Asked for her recollections about this stage in her recovery, Marissa says, “At first, I was asleep almost the entire time. I knew what was going on but I just shrugged the situation off and went back to sleep. I did not want to get stressed out because I knew that would make things a lot worse.” Admiring her fortitude, Jan says, “She definitely took it like a champ. She was a trooper through the whole thing.”
 
To help bolster Marissa’s spirits, and to help her family out financially, the hockey association she played with hosted a fundraiser to help with travel and other expenses. More than 1,000 people came out to show their support. The event was covered in the media, which referred to her as “Marissa the fierce.”[3] #MarissaTheFierce began trending on social media.
 
In addition to this outpouring of support, Marissa pays special tribute to her dog Bauer, named after the company that makes hockey skates, for getting her through this difficult time. Thankful for all the help they received from the community, Marissa’s family later fundraised forthe Brain Tumour Foundation of Canada and Make-a-Wish Foundation.
 
Eager to hear the results from the genetic analysis, Jan concedes she “drove the doctor a little crazy” because she was constantly asking if there was any news. Four distinct genetic mutations were identified that contributed to Marissa’s cancer. A treatment was identified that targets one of these mutations.
 
As it turns out, further treatment was not needed. The surgery was a success, with no reoccurrence of the cancer. However, says Jan, “it is very reassuring to know PROFYLE has identified a drug that we now have in our back pocket if a problem were to arise.” She adds that, based on this new form of therapy, “there are always new trials coming out” that could target the other three mutations and add to Marissa’s arsenal of treatments if need be.

Five years after her ordeal began, Marissa is back to playing hockey following physiotherapy. Now 18, she looks forward to a new chapter in her life, one that is no longer defined by cancer. She plans to study early childhood education.
 
[1] Gord Downie was diagnosed with terminal brain cancer in May 2016 according to Billboard News.
[2] According to the CBC, Gord Downie talks about cancer, his recent cross-country tour and why he's focusing on Indigenous issues
 
[3] “Marissa the fierce: Community rallies around N.B. teen with brain tumour.” CTV Atlantic. November 9, 2017. Accessed online.


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