Family’s heartache at losing baby Oliver to a brain tumour
A MUM has spoken of her and her family’s devastation after losing their 11-month-old baby to an aggressive brain tumour.
Oliver was diagnosed with the tumour when he was just three months old.
After surgery and months of chemotherapy, the family from Blackwood in Caerphilly county were told the tumour had returned and baby Oliver was too weak for surgery.
At just 11 months old, they celebrated his first birthday early, surrounded by their family and friends.
Oliver died that night surrounded by mum Zara-Vivian Price, dad Nathan Price and older brother Harley.
Two years on, mum Zara has shared her story in a bid to raise awareness of the condition, while also raising funds for charity in Oliver’s memory.
Primary school practitioner Zara said they first spotted something was wrong at 11-year-old brother Harley’s rugby Christmas party in 2019.
She said: “We were at Harley’s rugby club’s Christmas party, and I could see only half of Oliver’s pupils and his eyes were fixed looking down.
“I thought it could be the lights and noise in the venue, but when it happened the next day on our way to holiday in Minehead my husband and I knew something wasn’t right.”
They took Oliver to A&E at Musgrove Park Hospital in Taunton. While he was there, he suffered a seizure. An MRI confirmed there was a mass on his brain.
“Everything seemed 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 Oliver underwent a craniotomy to remove the tumour which was located in his third ventricle. The surgery took almost 12 hours.
“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’.
“I felt elated and wrapped my
arms around him with relief.”
They spent Christmas as a family in hospital with hope that this was the beginning of the end of Oliver’s treatment.
However, on December 29, histology results came back inconclusive due to the extreme aggressiveness and rarity of the tumour.
At the beginning of 2020, Oliver had four rounds of chemotherapy.
In March the dose was increased and he also had a stem cell transplant to aid his recovery.
Zara said: “Nathan and I took it in turns to be with Oliver and 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.
“As well as mucositis, Oliver’s heart rate increased and he was given another scan which showed he had developed veno-occlusive disease. It was May before we could return home fully.”
When the family were home Oliver developed a head tilt and, after a scan, Zara and Nathan were given the devastating news the tumour had returned. It was on a different part of Oliver’s brain and it was already 1cm in size.
Zara 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. I had to push and fight for Oliver to have more surgery and we finally had a date on July 28, 2020.”
While 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, which was the last day they shared with Oliver
Zara added: “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 singing when we were singing Happy Birthday as Nathan held him in his arms.”
Oliver died that night, at 11.50pm, surrounded by his parents and older brother.
Since his death, Zara has fuelled her energy into raising funds for Brain Tumour Research.
Last year, she raised more than £1,150 for the charity by taking part in Wear A Hat Day, and this year she wants to raise even more by completing a total of 3,000 squats throughout November.
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.”
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 in to the disease.”
Brain Tumour Research funds sustainable research at dedicated centres in the UK.
It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.
The charity is the driving force behind the call for a national annual spend of £35m in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia, and is also campaigning for greater repurposing of drugs.
To donate to Brain Tumour Research via Zara’s fundraiser, visit facebook. com/donate/809579163493449/