Childhood Brain Cancer Awareness Day: How a five-year-old’s diagnosis brought family closer together

This story first appeared in the Herald Sun, Saturday 26, 2020

Emily Cosenza, NCA NewsWire

When Rachelle and Nathan Brown first heard their 20-month-old daughter was diagnosed with ependymoma, a form of brain cancer, they knew their lives would never be the same.

Georgia was found to have a 4.5cm tumour in May 2017.

Since then, the now five-year-old has undergone multiple surgeries, chemotherapy and radiation therapy.

But she continues to take it in her stride to live her best life.

Georgia — described by her mum as a go-getter and leader — finished her most recent treatment in December 2019.

However, there is no cure.

“Thankfully we’ve had some stability since so hopefully that give us more time,” Mrs Brown said.

“That’s the tough thing with ependymoma – we don’t know how long we have that good time. It’s unfortunately a waiting game which is a hard thing to go through but we’re taking the good while we can.

“She’s really outgoing and loves playing with her friends and sisters and a lot of people who’ve met her after her diagnosis and found out have been amazed because she’s so resilient and happy.

“The impact of this cancer on her thankfully has not affected her mentally. It might have physically but she’s not letting it defeat her and gives everything a go.”

Mr Brown described his daughter as amazing, resilient and supportive.

“She’s the kind of kid who would be pricked and probed and never complain,” he said.

Looking back on the day of her first diagnosis, Mrs Brown said she clearly remembered the look on the doctor’s face when they broke the news.

“The last time I saw Georgia, she was her reading her Dr Seuss book before she was put under and she was in a lot of pain and we didn’t see her awake until the following day … where she was attached to tubes and had probes all over her head and that was really hard to deal with,” she said.

“The fact we couldn’t talk to her before she went in for an operation, we didn’t know how she was going to come out of that or the capacity and it was like a switch flicked the minute the surgeon told us there was a mass and our lives completely changed forever.”

Georgia’s parents, both 36, said her sisters Rosey and Whitney were used to seeing their sister go in and out of hospital.

Mrs Brown said despite their ongoing struggles, the experience had made the family stronger than ever.

“We often remind ourselves how wonderful a unit we’ve become and we’ve always been a very close family but we don’t let Georgia’s cancer fully affect our whole lives,” she said.

“It’s made us more open to take on opportunities as a family and experience life a bit more than we would have because whether time is on our side, we don’t know.

Mr Brown said they didn’t allow Georgia’s cancer to limit what they could do.

“There have been a lot of highs and lows going through this journey over the last three years; from the original diagnosis, periods of relative health, the re-occurrences, and where we find ourselves now,” he said.

“We’ve always had each other’s back and when one of us is low, we help each other through and it’s been an incredible process to go through and it’s strengthened our bond.”

With Saturday marking Childhood Brain Cancer Awareness Day, Mr and Mrs Brown said they wanted to raise awareness to secure more funding for research and resources for childhood brain cancers.

The Federal Government launched the annual awareness day in 2019.

Childhood brain cancer is the second most common cancer in Australian children, with about 100 aged 0-14 diagnosed each year.

More than 30 children are expected to die from the disease in 2020.

Childhood Brain Cancer Awareness Day focusses on one strain of the disease each year, with the 2020 spotlight on ependymoma, a tumour which arises from tissue of the central nervous system.

The cancer is more prevalent in children, which is more likely to be intracranial, compared to adults, where it’s commonly located in the spine.

The Kids’ Cancer Project Board chair Doug Cunningham lost his five-year-old son Murray to the disease, which sparked his urge to give back to others going through what he and his family experienced.

Murray was diagnosed at age four.

He endured an operation, cranial radiotherapy and further treatment, but was only cancer-free for a few months before it returned.

He passed away in June 2016.

“He was such a positive kid. He was sporty and happy,” Mr Cunningham said.

“I’m dedicated to raising awareness about ependymoma and all children’s cancers because I know the more we do that, the more people will understand that scientific research will discover the solution.”

Mr Cunningham said finding the right balance to between giving enough therapy to eliminate ependymoma while not damaging healthy cells and causing unnecessary side effects was one of the most difficult challenges in treating tumours in children.

“Medical research is a long-term play, but it holds the key to being able to treat ependymoma and other childhood cancers effectively, and by that, I mean with minimal suffering and 100 per cent survival,” he said.

It’s something the Brown family also agree on.

Liz Dawes founded the Robert Connor Dawes Foundation in memory of her 18-year-old son who died from the disease seven years ago.

Ms Dawes said the foundation had specific interest in funding ependymoma research.

“His spirit lives on, inspiring us to work hard to change the odds for other young people,” she said.

The Federal Government pledged $5 million for childhood brain cancer clinical trials from 2019 to 2024, as part of its commitment to doubling the 10-year survival rate and improving the quality-of-life of people living with brain cancer.

Federal Health Minister Greg Hunt said he was delighted to see Australian charities and other organisations collaborating to make an impact on childhood brain cancer.

“Our Government is invested in turning these statistics around and through Cancer Australia, we are empowering organisations such as The Kids’ Cancer Project and Robert Connor Dawes Foundation to collaborate with childhood brain cancer groups, people affected by childhood brain cancer, NGOs and researchers to ensure better outcomes for children,” he said.

The Kids’ Cancer Project funds scientific research to help improve childhood cancer treatments, and ultimately find a cure.