A MUM from Blackwood who lost her baby son to an aggressive brain tumour has said that “more needs to be done to understand the complexity of the disease”.
Zara Vivian-Price, 37, lost her son Oliver to brain cancer on July 20, 2020 – he was just 11 months old.
Baby Oliver had been diagnosed with an extremely rare and aggressive brain tumour when he was just 15 weeks old.
Ms Vivian-Price and her husband Nathan, who were on holiday at the time, took their son to Musgrove Park Hospital A&E in Taunton after noticing they could only see half of Oliver’s pupils, and his eyes were fixed looking down. While at hospital Oliver had a seizure, and an MRI found he had a mass on his brain.
Oliver with big brother Harley and parents Nathan and Zara. Picture: Zara Vivian-Price
Ms Vivian-Price, a primary school practitioner, who is also mum to Harley, 11, said: “Everything seemed very tense all of a sudden.
“We saw a nurse approach the room we were in with a box of tissues and two glasses of water, and I knew the news was going to be bad.”
Six days before Christmas 2019, Oliver had a craniotomy to remove the tumour located in his third ventricle, which took almost 12 hours.
Oliver after his brain surgery. Picture: Zara Vivian-Price
“I remember the surgeon walking through the door of the high dependency unit where Oliver was recovering and he said ‘I’ve got it all’," said Ms Vivian-Price.
“I felt elated and wrapped my arms around him with relief.”
Oliver in hospital at Christmas. Picture: Zara Vivian-Price
The family spent Christmas in hospital, and in the New Year Oliver had four rounds of chemotherapy. His dose was increased in March, and he was given a stem cell transplant in an attempt to aid his recovery.
“Nathan and I took it in turns to be with Oliver," said Ms Vivian-Price. "The whole experience was horrendous.
“The inside of Oliver’s mouth and stomach was burned from the toxicity of the chemo.
“The hope was the treatment would combat any cancerous cells that were left and he would grow-up to live cancer free.
Oliver died at 11 months. Picture: Zara Vivian-Price
“As well as mucositis, Oliver’s heart rated increased, another scan showed he developed veno-occlusive disease. It was May before we could return home fully.”
At home, Oliver developed a head tilt, and a scan found that his tumour had returned on a different part of his brain, and was already around 1cm in size.
Ms Vivan-Price said: “The healthcare team didn’t know how to treat Oliver’s tumour because of how complicated and unique it was – there were no other cases of this tumour that they were aware of."
Oliver in hospital. Picture: Zara Vivian-Price
Whilst waiting for a second operation, Oliver suffered a stroke and developed facial palsy.
The family were told he was too weak for surgery, and he was given palliative care.
Knowing he wouldn’t make it to his first birthday, the family celebrated a month early, on July 22. Oliver died that night, at 11.50pm, with his parents and brother at his bedside.
He would have turned one on August 29, 2020.
Ms Vivian-Price said: “Our family and friends were very supportive and although they rallied around to help us make the day special, we couldn’t help but feel consumed by the thought of losing Oliver and what was about to come.
“I remember crying when we were singing Happy Birthday as Nathan held him in his arms.”
Oliver's first birthday. Picture: Zara Vivian-Price
Now, in an effort to prevent other families from having to go through what they experienced, Ms Vivian-Price is taking part in Brain Tumour Research’s 100 squats or Star Jumps Challenge in November and is fundraising to find a cure.
She said: “I’m going to give it my best shot and I would do anything to raise money and awareness for a cause so close to our hearts.
“We are told how rare brain tumours can be, yet so many children have lost their lives to this disease, and we want to support a charity that is doing all they can to fund research to find a cure.”
Last year, she raised more than £1,150 for Brain Tumour Research by taking part in Wear A Hat Day.
According to Brain Tumour Research brain tumours kill more children than leukaemia and any other cancer, yet historically just one per cent of the national spend on cancer research has been allocated to brain tumours.
Mel Tiley, community, development manager at Brain Tumour Research, said: “We’re grateful to Zara for sharing Oliver’s story to help us raise awareness of how indiscriminate brain tumours are; they can affect anyone at any age.
“We wish Zara the best of luck with her challenge and it’s through the support of families and individuals of people like Zara who are helping us with our vision to find a cure into the disease.”
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