For over three years, I carried around an ugly navy binder to every appointment.
It was filled with articles, business cards, pamphlets, notes, and even parking receipts.
By the end of my husband’s brain cancer journey, it was bursting at the seams, heavy and barely able to close.
But this binder brought me comfort, knowledge and hope during a time that was very bleak.
Back in 2016, my husband, Adam Fanaki, was diagnosed with terminal brain cancer. He was 47 years old, a practising lawyer and leading a healthy life until he was told that he had glioblastoma.
The following two weeks would be a whirlwind for us.
For anyone who has been diagnosed with a terminal illness, every second feels like life or death. We were fighting for the former.
Adam and I contacted every healthcare worker, a colleague in medicine and anyone who could point us in the right direction. That direction was called optimism.
We read every paper and article on GBM. We watched many YouTube videos from experts on the disease.
All the while fielding calls, emails and texts from family and friends on how they could help and parent our two children, who were in grades 9 and 12 at the time.
There was no balance. It was all about making it from one day to the next, but any help our way was graciously welcomed.
One of these ways came in the Neurosurgery ICU at St. Michael’s Hospital following Adam’s craniotomy.
Watching him sleep peacefully, with his head in 47 staples and bandaged up, a nurse came in and handed me a copy of the Adult Brain Tumour Handbook from Brain Tumour Foundation of Canada.
It would become my go-to resource for everything related to Adam’s brain cancer journey. I read it cover to cover.
Although it didn’t take the place of my binder, it did serve as a more portable resource for me.
Flash forward to 2022, and it has been over two years since we lost Adam.
At that time, we established The Adam Fanaki Brain Fund to support charities like Brain Tumour Foundation of Canada in their efforts to help patients and their caregivers.
Our vision has been to help relieve some of the stress of living with a brain tumour. To date, we are proud to say that we have funded numerous programs and services, including a new initiative at Brain Tumour Foundation of Canada.
This year they reached a significant milestone when they launched a new digital app, making their essential handbooks available across different platforms and to people with varying needs.
Now users can access the handbooks as well as support chats on their smartphones and tablets in accessible formats. Information for both adults and children living with a brain tumour is available.
As this tool continues to expand, it will offer more and more resources to help patients and their caregivers.
Making this app possible for people affected by brain tumours, giving to others, and the fundraising that makes it all possible has allowed our family to heal and move forward.
We are grateful to the hundreds of donors who have supported us, including Canadian business leaders such as our lead donor, Davies Ward Phillips, and Vineberg LLP.
The Adam Fanaki Brain Fund is honoured to be able to give back to this community.
By Janet Fanaki
Janet Fanaki is the founder of The Adam Fanaki Brain Fund. She is also the creator and host of the RESILIENT PEOPLE podcast and a public speaker and writer. Janet lives in Toronto with her two children, Isobel, and Sam