Marie-Chantal’s Story

Marie-Chantal’s Story

At the young age of 10, Marie-Chantal had major brain surgery that would save her life. 

That experience has had a lasting impact on Marie-Chantal to this day: She now shares her journey growing up a pediatric brain tumour survivor to encourage others navigating a diagnosis to access the services to which they are entitled to, and to help them heal globally, not just physically. 
As a budding champion swimmer, Marie-Chantal had dreamed of winning gold at the Olympics. However, during the Christmas holidays one year, she received a diagnosis that would derail those dreams. On December 28, 1988, she was admitted to the hospital because of vomiting, nystagmus (involuntary movement of the eyeball) and truncal ataxia (incoordination of movements) A large, non-malignant tumour was blocking the entire fourth ventricle in Marie-Chantal’s brain and had infiltrated her brainstem: a cerebellar pilocytic astrocytoma. On January 9, 1989, Marie-Chantal underwent a six-hour operation that involved permanently removing part of her skull and vertebrae to reach the mass. Unfortunately, due to the tumour’s entwinement in Marie-Chantal’s brainstem, it couldn’t be removed in its entirety. 
The tumour and surgery had caused generalized muscle weakness and a complete loss of balance, and Marie-Chantal lacked the physical coordination to even stand up. Just one week later, Marie-Chantal started the painful process of learning how to walk again. Within three days, however, she was able to move about with the help of a walker. Still, Marie-Chantal would require months of homeschooling as she recovered from her surgery both physically and psychologically. 
It’s these traumatic experiences that led the 10-year-old to begin feeling extremely anxious in a way she’d never felt before. “On the surface everything looked ok,” recalls Marie-Chantal. “I was still doing well in school and was back to playing sports. However, the rejection, isolation and embarrassment that I felt led to selective mutism. I shut everyone out, and wouldn’t talk about how I was feeling, and so no one knew how I was really doing.”
Marie-Chantal underwent regular MRIs until she was 33 years old to monitor the residual tumour tissue in her brainstem, adding an extra level of distress to her emotional wellbeing. “It’s hard to turn the page on a traumatic event when, every year, you have to get another scan to confirm if everything in your brain is still normal or not,” she explains. 
Today, Marie-Chantal is in her mid-thirties and a dynamic entrepreneur who’s building an online language school that connects students all over the world with teachers in Latin America. She is still managing the emotional repercussions of and understanding the limits caused by her brain tumour journey – something she says could have been lessened by having a better understanding of the mental health effects she might experience post-recovery and the available support services that could help with these transitions. “For months and even years after my surgery, I needed help, and someone to talk to, but no one offered me this type of support because no one could interpret my non-verbal signs." 
It’s important to Marie-Chantal that families facing a brain tumour diagnosis understand the psychological impact that this disease can have on the whole family, and that they advocate for their children, and for their own quality-of-life as caregivers. “It’s a road that’s unique, the brain tumour journey, no matter how old you are. What I hope, by sharing my story, is that patients will access the services to which they’re entitled. The ultimate goal is to minimize the impact of this journey, not only for the survivor but also for all their caregivers.”
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Story posted February 2016 

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