‘Drs said our 6yo had a stomach bug, but it turned out to be so much worse’

“You need to go to the hospital, surgeons will be waiting for you … there’s something in his head.”

Alexandra Feiam

3 min read

February 12, 2024 - 12:41PM

Family Life

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Parents Ray and Jacqui became concerned when their six-year-old son Daniel began vomiting and rapidly losing weight in January 2021.

He was once a happy and energetic boy, but suddenly the Brisbane boy was struggling to stay in school without throwing up.

At first, he was diagnosed with a stomach bug, but after months of ongoing symptoms and no sign of relief, his parents became increasingly worried.

Then Daniel started having seizures.

Daniel was six when doctors found a golf ball-sized tumour in his brain. Source: 7News

Doctors found a golf ball-sized tumour in his brain

Out of curiosity and concern, his dad tracked his son’s stress, heart rate and HRV levels on his smartwatch.

The next morning, he was horrified to learn his son was sleeping with his body in a constant state of stress.

“This is not normal,” Ray told 7News, pushing back on the initial diagnosis the doctor gave his 6yo son.

He urged the medical team to issue an MRI, but halfway through the scan, a staff member called for an ambulance.

“You need to go to the hospital,” he told Ray. “There’ll be some surgeons waiting for you. There’s something in his head.”

Ray’s initial concerns were accurate; there was a tumour the size of a golf ball on Daniel’s brain.

The then-6yo was rushed to the Queensland Children’s Hospital, where he underwent emergency surgery to drain 110ml of fluid from his brain.

After closer inspection, doctors were relieved to tell Ray and Jacqui their son’s tumour was benign.

However, it didn’t stop the issues from mounting. “Although it’s benign, it's still not a great tumour to have,” Ray told the Starlight Foundation. “As it can affect a lot of your growth hormones.”

Daniel has faced several surgeries to remove the fluid from his brain, with doctors draining almost a litre from his head in total.

The tumour will have to stay in Daniel's head until he's old enough to have it safely removed. Source: Starlight Foundation

"Although it’s benign, it's still not a great tumour to have"

Since his diagnosis, he has undergone eight separate operations to help ease the pressure on his brain.

Despite not being cancerous, the tumour is located next to the hypothalamus, the part of the brain that controls emotions and regulates temperature in the body, and since it’s located so close to his right eye, the tumour cannot be removed until he is old enough.

Doctors think the wait could be years, so he will likely have to wait until he’s a teenager before doctors can give the green light.

Three years after his diagnosis, the now-nine-year-old still has a long way to go.

Of course, with his treatments, frequent scans and operations, the Brisbane boy spends a lot of his time in hospital, which naturally causes him stress and anxiety.

For a lot of the early parts of his diagnosis, Daniel was becoming restless.

A nurse recommended he try the Starlight Rooms - a space dedicated to children who want to escape medical treatments and need time to play, run around, and be a kid.

Since discovering the Starlight Room, Daniel has spent most of his time there. “Every appointment has to have a Starlight visit,” said his dad.

Daniel and his dad Ray have raised over $17,000 for the Starlight Super Swim Challenge. Source: Starlight Foundation

"There are a lot of sick kids throughout Australia"

A lover of swimming and sports, he has always been “happy to get out and about playing” and living life like a “normal” kid.

So when the Starlight Super Swim Challenge was announced in 2023, Daniel and his dad were instantly on board.

Combining his passion for swimming and the Starlight Room, Daniel has managed to raise over $17,000 in the Starlight Super Swim Challenge, which he completed alongside his father.

Together, he and Ray swam laps twice a week, waking up at 5am and completing more than 54.5km in total.

Since competing in the Starlight Super Swim Challenge, Daniel feels “more proud” to go to the Starlight Room, as he feels like he has helped the team buy some of the items other kids can enjoy.

His dad Ray told parents that if they hadn’t heard of the Starlight Room, they were “one of the lucky ones”, as their kids “haven’t been sick.”

“But there are a lot of sick kids throughout Queensland and Australia in general, so whatever you can give, it really helps kids struggling and battling through medical issues,” he said.

The Starlight Super Swim Challenge runs from February 1-29. You can find out more about the challenge here.