Brain Tumour Foundation of Canada is focusing our 2021 research grants on pediatric brain tumours. In the leadup to our 2021 pediatric research grants, we asked both a researcher and a pediatric brain tumour patient for their insights to broaden our understanding of different aspects of the disease, its treatments and its longer-term effects.
Pediatric Brain Tumour Patient
How old were you when you were diagnosed and what was your tumour type?
I was 4 years old (one month before my 5th birthday) and it was a Medulloblastoma.
Where did you or your caregiver go to get more information about your diagnosis?
My parents consulted with the pediatric oncologists and the oncology nurse at the Janeway Children’s Hospital. They also did some research on the Internet.
How did you connect with Brain Tumour Foundation of Canada?
After my mom saw posts on Twitter about the scholarships for survivors.
What was a positive thing that came out of your diagnosis?
Being able to attend Camp Delight as a camper (a camp for children with cancer, their siblings and bereaved siblings). I have also volunteered with various organizations to raise awareness of childhood cancer. I have also met with other children that were diagnosed with brian tumours to provide inspiration and hope.
Lastly, it has inspired me to be become a nurse so I can help other children going through a cancer diagnosis.
What would you like the general public to understand regarding the importance of pediatric BT research?
A pediatric brain tumour not only impacts the child that is diagnosed, but it impacts every family member around them. Pediatric BT research could help a child avoid surgeries, chemo and radiation therapies and give them hope of a happy healthy life.
The brain is the control center of the body and treatment during childhood can have an effect on them for their whole life. Further developments in pediatric BT research can save lives and improve the treatments available for children like me.
Has knowledge of your particular tumour type changed since you were diagnosed/treated?
I know there has been research in the area, but I am not sure if it has actually changed the way the brain tumour patients with a similar diagnosis are treated. I am also now aware that there have been four subtypes discovered for a medulloblastoma and this should help make decisions on more effective treatments.
Read more from Dr. Vijay Ramaswamy’s perspective here.