Brandon's Story: "And keep fighting I will..."

Brandon's Story: "And keep fighting I will..."

Brandon's Story was written by his mother Jennifer. Jennifer is a long-time passionate and active advocate for the brain tumour community. She shares Brandon's story in support of Brain Tumour Awareness Month in hopes that it will both honour his legacy and let other families know they are not alone.

Brandon was the type of person you only had to meet once to remember. His bright smile, kind heart, positive attitude and love of life made him impossible to forget.

Five-and-a-half months into my pregnancy, I developed complications and doctors told me I was going to lose him. But he fooled everyone and was born full-term weighing in at a healthy eight pounds. From that point on I considered him my miracle baby and always felt he was put on this earth for a reason.

That reason would become painfully obvious a mere four years later when he was diagnosed with a brain tumour. It was non-malignant; a low-grade pilocytic astrocytoma to be exact. But its location deep in the centre of his brain made it difficult to achieve a complete resection. After four difficult years of treatment, including surgeries, chemotherapy and radiation, Brandon’s disease stabilized and he enjoyed 10 amazing years of nearly perfect health.

He accomplished a lot during those years and he was determined to do all he could to raise awareness of the disease that had robbed him of his childhood. He was named the Nova Scotia poster child for the Children’s Wish Foundation; went into schools to educate students about brain tumours; planned and hosted fundraising events in the community and awareness days at his schools; spoke at various brain tumour functions; addressed funding partners at the IWK Health Centre where he received the bulk of his treatment; and was always willing to share his story with the local media during Brain Tumour Awareness Month and at other times of the year when opportunity knocked.

As for me, I became known as a mother on a mission. I became an active member of a variety of advocacy organizations include the Maritime Chapter of the Brain Tumour Research Assistance and Information Network (b.r.a.i.n.child) for the families of children with brain tumours and their families, which led to joining the Canadian Alliance of Brain Tumour Organizations (CABTO), an alliance of volunteer organizations dedicated to enhancing the quality of life of brain tumour patients and their families.

As a result of my involvement with CABTO, I played an instrumental role in the creation of Private Members Bill M-235, which called for the creation of a national standard for the collection of all brain tumours in Canada. The bill was passed by an overwhelming majority in the House of Commons on February 14, 2007.

Brandon and I were invited to meet behind closed doors with Prime Minister Stephen Harper prior to the first reading of the Bill at which time we shared a bit about his journey and the importance of having the Bill passed with the leader of our country.

Life was great; we thought we had it beat. But in September of 2011, just weeks into Brandon’s graduating year at high school, he began to experience some bizarre neurological symptoms. We were shocked when an emergency MRI showed an inoperable malignant tumour which we would later learn was an extremely aggressive Grade 3 anaplastic astrocytoma.

It was Brain Tumour Awareness Month and we decided to share Brandon’s story with the local media like we had so many times in the past. With his usual determination, he vowed to beat cancer and graduate with his classmates. He immediately began chemotherapy, but despite doing remarkably well clinically, the tumour continued to grow. By early in the New Year we were left with no other option than re-radiation.

His post-radiation MRI showed amazing results and within days of receiving the news, Brandon was excitedly organizing a brain tumour awareness day at his school.

Dressed in grey t-shirts stating the school’s support of brain tumour research, he and all 200 of his fellow graduates released a sea of grey balloons into the sky as a sign of hope to others.

He once again shared his incredible story with the media, a very different story from the one the previous fall, and proudly displayed the before and after images of his most recent MRI on his iPhone. These showed a tumour that was once the size of a fist reduced to little more than a wisp.

He was able to attend both prom and graduation ceremonies and even began making plans to attend university in the fall with his sights sets on becoming an engineer. He made a to-do list of all the things he wanted to accomplish in his immediate future including a backpacking trip through Europe and skydiving. He was ready to get on with life and nothing was going to stop him.

But the euphoria was short-lived when a mere two weeks later an MRI showed a mass. The writing was on the wall and at the age of 18, Brandon humbly refused further treatment. He simply wanted to enjoy what time he had left. Some people view it as giving up but nothing could be further from the truth. He was simply facing the reality of the situation, a reality we knew all too well from past experiences with other brain tumour patients that we had gotten to know.

Another September had rolled around at this point and Brandon asked to share his story one last time with the media. He spoke openly and honestly about being terminally ill and about what an amazing life he had lived. There were no tears or fear; just Brandon being Brandon in his own positive way.

Hope during the palliative care stage of Brandon’s life came in a very different form. He asked to become an organ donor and for his brain be donated to medical research. Hope had carried him throughout his life but it also gave him a sense of peace in the face of death.

Brandon left us on October 27, 2012 but his legacy lives on. He accomplished more during his short time on this earth than most people do in a lifetime. He believed that one person could make a difference and he did just that.

He gave me a garden stone with the word ‘hope’ on it on the Mother’s Day prior to his death. This stone now rests at his grave as a constant reminder that although he is no longer with us, hope remains.

Although the past year has been excruciatingly difficult, I continue to draw strength from Brandon in my efforts to improve data collection and enhance the quality of life for brain tumour patients and their families in Canada. I promised Brandon I would keep fighting this disease and keep fighting I will.

In November, 2016, Jennifer and her husband Darren are Riding for the Registry, by cycling 500 km from Angkor Wat, Cambodia to Bangkok, Thailand this November to raise money and support for the Brain Tumour Foundation of Canada’s National Brain Tumour Registry which, once completed, will ensure each and every brain tumour in Canada gets counted. 
Join Jennifer on the Advocacy journey.

 Thank you Jennifer for sharing Brandon's story and for all of your work to make change
for every Canadian affected by a brain tumour.

<learn more about Riding for the Registry

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Story posted October 2013. Since then, Brain Tumour Awareness Month has moved to May.

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