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A mother who lost her 11-month-old baby boy to a brain tumour is raising money for charity in his memory.

Zara Vivian-Price, from Blackwood, lost her son, Oliver, in July last year.

Now, she is raising money for the charity Brain Tumour Research, by organising a ‘Wear A Hat Day’ at the primary school she works at on Friday, March 26.

Zara, 35, has opened up about Oliver’s illness to mark Brain Tumour Awareness Month, which takes place throughout March.

Zara said she first noticed something was wrong with Oliver during a Christmas party when he was just 16 weeks old. She said: “Oliver’s eyes appeared in a fixed position looking down. We wondered if he was just reacting to the music and flashing lights.”

The following day, Oliver was still showing “sunset” eyes and so Zara and husband Nathan took him to A&E.

Oliver’s left arm was trembling too, so the doctor, suspecting he might be having a seizure, booked him in for an MRI scan.

Zara said: “When it was time to get the results from the scan, I saw the doctors with tissues and a jug of water before we were called into the room. I knew it was going to be bad news.

“They said they were very sorry but they had found a mass on his brain. We couldn’t fathom it. It was the biggest shock ever. My first question was: ‘Is he going to die?’ They said they didn’t know.

“They’d already phoned the neurosurgeon at Bristol Royal Infirmary and the ambulance came for him within the hour.”

On December 19, 2019, Oliver had an operation to remove the mass.

“It was an agonising wait.”, said Zara.

“We were allowed two phone calls to theatre during his surgery and both times we were told, ‘everything is going to plan’. I just wanted to hear them say he was going to be fine. It was the most horrific time.”

But while the operation was successful in removing the mass, the family received some bad news soon after.

On December 29, the family met with Oliver’s oncologist, who revealed the mass was an aggressive, rare, and high-grade tumour.

Zara said: “Up to that point, there’s been no mention of the word ‘cancer’. It was devastating. The next step was more surgery to insert a Hickman line, through which Oliver’s chemotherapy would be administered. 

“The chemo regime was horrendous. After six cycles, they increased his dose and he had to have a stem cell transplant.”

Oliver began a higher dose of treatment in March 2020, which made him “very poorly” with sickness and diarrhoea.

“He had to be bathed four times a day, to try to prevent the chemicals in the chemo from seeping through his skin and burning him. He developed mucositis, which caused him to have blisters in his mouth and his tummy was so sore, he had to be fed through his bloodline.

“His heart rate was through the roof and he developed veno-occlusive disease. His skin would itch and he’d have terrible nose bleeds. It was a month of absolute hell.” 

Oliver returned home in May and the family isolated together due to the coronavirus pandemic.

Zara said: “The weather was beautiful. We had barbeques and enjoyed the garden and the hot tub. It was just the four of us [Zara, Nathan, Oliver and eldest son Harley] and it was perfect.”

In June, Oliver had his post-treatment MRI scan. Days later, the family were given the heart-breaking news that a second tumour was growing in the back of Oliver’s brain.

Zara said: “At first we were told it was inoperable but I wouldn’t stand for that and wanted Oliver to be given every possible chance. After an MDT meeting, the neurosurgeon agreed to operate and he was booked in for surgery on July 30, 2020.”

On July 17, the family went to stay in a caravan in New Quay, Ceredigion, for a few days. They noticed Oliver’s face looked “distorted” and took him to hospital on their way home for a check-up.

“We were told the tumour was causing a facial palsy and he had ulcers on the back of his throat. They fitted a nasogastric tube and sent us home. The next morning, Nathan went into Oliver’s bedroom and couldn’t wake him up or stimulate him. He was really floppy.

“Even when he opened his eyes, he was very absent. I took him into our room on my own and lay on the bed with him. I had an overwhelming feeling he was dying.” 

The family was told Oliver had had a stroke and had only weeks, or possibly days, left to live.

Oliver’s condition worsened and he fell into a coma. Zara and Nathan decided to celebrate Oliver’s first birthday early. He had been due to turn one on August 29.

Zara said: “Nathan and I were like zombies but our amazing friends and family rallied round and we all celebrated together. We had a photographer to capture some really special moments.

“Oliver was so peaceful but during the course of the day, his breathing became quite rapid and his lips were turning blue. When our guests left, I asked them to say goodbye to Oliver. I just knew.

“At 9pm we put his pyjamas on him and we spent the next few hours lying on our bed with him, telling him how much we loved him and how proud we were.

“We said that sometimes superheroes have to take their capes off, giving him permission to go. Oliver died at 11.55pm, surrounded with love.”

Wear A Hat Day

Now in its 12th year, Brain Tumour Research’s ‘Wear A Hat Day’ has raised more than £2m towards research into brain tumours.

Zara said raising awareness of brain tumours has been “one of my missions since Oliver died” and said the “lack of funding into this area of cancer research baffles me”.

She added: “Oliver had a beautiful but tragically short life. If I can give something back in Oliver’s memory, then that will be part of his legacy.” 

Joe Woollcott, community development manager for Brain Tumour Research, said: “Unlike many other cancers, brain tumours are indiscriminate. They can affect anyone at any time. Too little is known about the causes and that is why increased investment in research is vital if we are to improve outcomes for patients and, ultimately, find a cure.”

To follow the family’s fundraising efforts, visit the SmilesforOliver Facebook group.

For more information about fundraising for Wear A Hat Day, visit wearahatday.org