A MOTHER from Blackwood is raising money for charity after she lost her baby to a brain tumour.

Teaching assistant, Zara Vivian-Price organised a ‘wear a hat day’ at the primary school where she works to raise money for Brain Tumour Research, after 11-month-old son Oliver died from brain cancer last summer.

Ms Vivian-Price, also mum to nine-year-old Harley, said: “We first noticed something was wrong at Harley’s rugby club’s Christmas party.

“Oliver’s eyes appeared in a fixed position looking down. He was only 16 weeks old, so we wondered if he was just reacting to the music and flashing lights.

Newborn baby Oliver

Newborn baby Oliver

Oliver as a newborn

“The next morning, we were travelling to Butlin’s Minehead Resort for a short break with friends.

“During the journey, Oliver was still presenting with ‘sunset’ eyes and my husband Nathan and I knew something wasn’t right, so we dropped Harley off with our friends and went to Musgrove Park Hospital A&E in Taunton.”

A doctor noticed Oliver’s left arm was trembling and thought he might be having a seizure, so ordered an MRI scan which revealed a mass on his brain.

“It was the biggest shock ever. My first question was: ‘Is he going to die?’ They said they didn’t know,” said Ms Vivian-Price.

On Thursday, December 19, 2019, Oliver had an 11-and-a-half hour operation to remove the tumour.

Ms Vivian-Price described the wait as “agonising” and added: “We were allowed two phone calls to theatre during his surgery and both times we were told, ‘everything is going to plan’.

Oliver in hospital

Oliver in hospital

Oliver in hospital

“I just wanted to hear them say he was going to be fine. It was the most horrific time.”

Following his surgery, Oliver was cared for in the high dependency unit (HDU).

His surgeon Mike Carter, told Oliver’s parents the good news: he’d successfully removed all of the tumour.

Ms Vivian-Price said: “The relief that washed over us was phenomenal. I gave Mr Carter a huge hug. He’d saved our baby and we couldn’t have been more grateful.”

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Sadly, the family’s ordeal was not over. Ten days later they met Oliver’s oncologist - a histology report revealed that Oliver's was a rare, aggressive, high-grade tumour. He underwent more surgery to insert a Hickman line to administer chemotherapy.

“The chemo regime was horrendous,” said Ms Vivian-Price.

“After six cycles, they increased his dose and he had to have a stem cell transplant.

Oliver in hospital

Oliver in hospital

Oliver in hospital

“He started the higher dose in the middle of March 2020 and it made him very poorly. We had to stay in a room that had its own ventilation system, as he was at a high risk of infection.

“He suffered 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.”

On May 6 2020, Oliver was finally well enough to go home where he isolated with his family. They enjoyed the beautiful weather and garden and it was “perfect”.

On June 12 an MRI scan revealed a second tumour growing in the back of Oliver's brain.

Initially his parents were told it was inoperable but, after a multi-disciplinary team meeting, a neurosurgeon agreed to operate and Oliver was booked in for surgery on July 30.

Hoping to enjoy some family time the family went to stay in a caravan in Newquay, on July 17. While away Oliver was “grizzly” and lost his appetite - his face also looked “distorted”. They took Oliver to hospital on July 20.

Ms Vivian-Price said: “We were told the tumour was causing a facial palsy and he had ulcers on the back of his throat. They fitted a nasogastric (NG) 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.”

Olivers first birthday party

Oliver's first birthday party

Oliver at his 'early' first birthday party

Oliver had suffered a stroke and his tumour was growing fast. Knowing they had little time left the family celebrated Oliver's first birthday a month early - he would have turned one on August 29.

Friends and family joined them for the birthday party with a photographer there to capture special moments.

“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,” said Ms Vivian-Price.

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

Ms Vivian-Price is now fundraising for Brain Tumour Research, encouraging pupils and staff to wear a hat on March 26 (2021) for the charity’s annual Wear A Hat Day.

The 35-year-old said: “I’m so pleased we’re getting involved. One of my missions since Oliver died has been to raise awareness of brain tumours and the fact that they are the biggest cancer killer of children and adults under the age of 40.

“The lack of funding into this area of cancer research baffles me. 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.”

Now in its 12th year, Wear A Hat Day has raised more than £2 million to help fund the fight against the disease.

Joe Woollcott, community development manager for Brain Tumour Research, said: “We were so very sorry to learn about Oliver’s passing.

"Our deepest condolences go to Zara, Nathan, Harley and all those who loved and cared for Oliver. Their terrible loss spurs us on to continue to find a cure for this awful disease.

"Our supporters’ dedication in these unprecedented times is genuine and motivational and we can’t wait to join them in putting on our hats, having some fun and raising money to fund sustainable research that will bring us closer to a cure for brain tumours.

“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.”

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 to speed up new treatments for patients and, ultimately, to find a cure.

Find out more about 'wear a hat day' at wearahatday.org or follow the family's fundraising page via the Facebook group SmilesForOliver