Brain tumour. These two words turned my world upside down two years ago when my son, Rishaan, was diagnosed with AT/RT (Atypical Teratoid Rhabdoid Tumour) shortly after his second birthday.
If you Google it, you’ll find that it’s described as a “deadly, very rare, and aggressive cancer” that occurs most often in children under the age of three. Further research helped me connect the dots—his frequent morning vomits, nausea, loss of appetite, and excessive sleepiness were all symptoms of a brain tumour. At the time, we brushed them off as acid reflux or a stomach bug.
I still remember the phone call from our oncologist when she said, “Most children with this cancer do not survive.” Still, I hoped against hope that my child would be an exception, that he would beat the odds, but sadly, it wasn’t our story.
Rishaan fought hard. And with a resilience that still amazes me. Sometimes, even with a smile through a gruelling 15-month treatment involving brain surgeries, chemotherapy, stem cell transplants, and radiotherapy. But he lost his battle in 2024. After all, he was only a little boy. My little boy. And how long can a child fight?
The truth is that he, and several children like him, fight the monster that brain cancer is with outdated weapons: no cure, no access to innovative medications, no proton radiation therapy in Canada, and very few clinical trials for childhood cancers.
Why Awareness Matters
That’s why awareness is so important. Awareness of brain tumour symptoms, awareness of available treatments—or the lack of them, and awareness of how far we still have to go.
Let’s look at some numbers:
- Every day, 27 Canadians are diagnosed with a brain tumour. Of these, about eight are malignant, meaning cancerous.
- Brain tumours are now the leading cause of cancer-related death in children and young adults under 20, surpassing even leukemia, which once topped the list.
- There are over 120 different types of brain tumours, making treatment especially complex.
- Around 60% of survivors are left with long-term effects ranging from vision and hearing loss to cognitive and hormonal challenges due to the intensity of existing treatments.
Despite these staggering statistics, research funding for childhood brain cancers remains painfully limited. Less than 7% of cancer research funding is directed toward pediatric cancers in Canada, and only a fraction of that goes specifically to brain cancer.
For aggressive and rare types like AT/RT, clinical trials are scarce, and new treatments are slow to emerge. Most therapies used in children are repurposed adult drugs, never tested specifically for pediatric use. In fact, survival rates for many childhood brain cancers have not improved in decades. For instance, while survival for leukemia has risen dramatically—from around 10% in the 1960s to over 90% today, the overall survival rate for malignant childhood brain tumours has remained poor. For instance, diffuse midline gliomas have a median survival of 12 months from diagnosis for decades. For AT/RT, the prognosis varies is about 30% though my conversation with doctors across Canda, US, and India indicated that it is indeed less than that.
This is due to lack of investment, collaboration, and visibility. Brain tumour research is complex and expensive, and with rare tumours like AT/RT, small patient numbers make large-scale studies difficult. But rarity should never mean neglect.
The Path Forward
We need increased research funding, better access to innovative treatments, and more number of pediatric clinical trials. We also need proton beam therapy, which can deliver radiation more precisely and safely, something that is still unavailable in Canada, forcing families to travel abroad for treatment at enormous emotional and financial cost.
So, this Brain Cancer Awareness Day (October 24), lets spread awareness which is the first step toward advocacy and lasting change, so that affected families don’t get to hear that there are no more options left to save their precious child. And one day, when a family walks into a hospital with this awful diagnosis, they hear, “Oh, we have a cure for that!”
Neha Bhatnagar
References:
https://www.braintumour.ca/media/fact-sheet
https://www.childhoodcancer.ca/how-we-help/
https://www.hopkinsmedicine.org/health/conditions-and-diseases/brain-tumor/brain-tumor-types