A mother's story of resilience in the face of life's biggest loss

This is the story of my beautiful boy Gus. It's a love story really, with no ending.

He came into the world with no fuss, quietly and with strength, a perfect birth. The first born.

Gus was a beautiful child; soft, sensitive, quiet and shy. The kind that observed the world in intimate detail with an inquisitive and creative mind. He thought laterally, not literally. He was, in short, a brainiac, and used his brain in ways that left me in awe.

When Gus was 11, in his final year of primary school, the brain that strongly defined him went under siege. He had brain cancer, an insidious tumour.

I had been concerned about some out of character behavioural changes and an obvious droop of his eyelid and took him to an opthalmologist who said there was nothing to worry about. I was still worried so I took him to the eye clinic and they referred him to Sydney Children's Hospital for an MRI where the tumour was confirmed. It all happened in a single day.

Our young family of five had been officially turned upside down.

His father Gavin, my beloved husband, had been diagnosed with lymphoma grade IV only four weeks prior. So they began their fight together, with myself and Gus' two younger siblings Josie and Van. It was March 2010.

We were about to embark on the fight for survival and give it our all. And we were in good shape to do so. Gavin and I were deeply in love, very united. Our kids, then aged 11, 9 and 4 knew they were loved and adored.

We were a tight unit. Our home was newly renovated and we loved it; it was a safe and beautiful haven for recovery and chemotherapy regimes that were to be our new life.

Importantly, the communication lines were wide open between us and the kids - what was going on, what it was likely to look like and how we would get through. And we would. Being fearful was only going to disempower us and, of course, you can imagine how the fear could take hold if we let it.

Our friends and family were part of the journey and once again connection and communication were wide open. They were to be part of this too. In fact we couldn't have got through without them. Human nature and its goodness reigned supreme. People all around stepped up, astonishing us with their kindness, generosity and love.

Gus' diagnosis meant biopsy surgery followed by resection of his brain to remove some of the tumour and, due to the tumour's diffuse nature, one fifth of his brain. We didn't know what that would mean entirely until he came out of the surgery. We were told loss of movement in his right side, a stroke, a change of personality were all possible scenarios.

Following the surgery, time revealed that Gus was in fact slightly re-wired. The quiet strength and courage were still there but a gregarious spark overtook his shyness and a positivity and glow lit up the room. I believe something greater was at play and he now had tools to embrace his different life, one filled with MRIs, surgeries, radiotherapy, chemotherapy and all that goes with it.

It always floored Gav and I just how accepting Gus was of his brain tumour and the suffering that came with it, the limitations and adjustments that were made to his every day life. He never did fuss or drama, it wasn't part of his makeup, he was innately driven by peace, trust and love, especially for his family.

Even when his father and fellow warrior Gavin lost his fight first, Gus' resilience and trust reigned supreme. Through their parallel journey of treatment and illness Gus knew he was so loved by Gav and he knew that love was not going anywhere, and remained even when Gav was gone.

Gus would say he thinks of the sun as one of Daddy's eyes and the moon as the other, saying "he's keeping an eye on me during the day and an eye on me at night".

We know where this story ends but Gus was about life, not death. He lived it with his eyes open, like there was nothing up, nothing to worry about. He was able to live fully and presently in the short life he had, a life that inspired so many through his quest to continue his father's legacy of compassion with RU OK Day, and his own quest to shine a light on much-needed research into brain cancer, a cancer that kills more children in Australia than any other disease. My own child, sadly, included.

Gus and I completed our physical journey together the same way we started, fifteen years after his birth. Me in awe of him and loving him tenderly and completely and he loving me back with a pure and adoring heart, grateful Gav was there to take his hand from here.

November is Walk4BrainCancer month around Australia for Cure Brain Cancer Foundation, founded by Charlie Teo. Register to walk at www.walk4braincancer.com.au to help raise funds for brain cancer research. Fundraise over $200 and be in the draw to win a luxury trip to New Zealand with The Rees Residences.

Last modified on Friday, 13 November 2015 16:34
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Maryanne Larkin

Maryanne Larkin is a mother to three and wife to one. In one challenging month both her husband and her son were diagnosed with cancer. Neither survived but both live on in their legacy of a joyful life lived to the full with acceptance, trust and deep love.

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