'Do the simple test': mum's plea after flash of camera detects son's eye cancer

Rocky
Rocky Photo: Kara Sefo

When little Rocky was four-and-a-half months old, his mother Kara noticed something strange in his left eye when he was playing one day.

"I caught, like a reflective in his left eye, it was like a cat's eye or marble, that sort of reflective depth," Kara tells Essential Baby. "And he had a lazy eye, but it wouldn't be all the time".

The 43-year-old mother from Newcastle in NSW also noticed that in every picture with the flash on, an orb always glowed in Rocky's eye.

When the problem persisted and Kara's concerns began to rise, she decided to take Rocky to their GP two months later. The GP checked his eyes and recommended that Rocky see an ophthalmologist, but said that he didn't think it was urgent.

"When I rang the specialist, it was a month wait," the mother-of-two says. "My mummy gut said no, ring back and say it's urgent, but we didn't."Rocky

Kara first noticed the reflection in Rocky's eye. Photo: Kara Sefo

When the family got to the ophthalmologist, it soon became obvious the matter was serious.

"The first thing they did was sit in the waiting area with the nurse and she put her hand over Rocky's left eye and had something sparkly and he followed it," she explains. "Then she covered the right eye and he started thrashing his head, so he couldn't see out of that eye."

She adds: "I just burst into tears because I think on some level, I just knew something serious was up".

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Kara says Rocky is a very 'normal little boy' and adjusting well

Kara says Rocky is a very 'normal little boy' and adjusting well Photo: Kara Sefo

 After two hours of tests, the doctor came back to tell them he had a team waiting at Westmead Children's hospital for them at 8.30 the next morning.

"I asked [the doctor] is it cancer?'" Kara recalls, "and he just said 'I don't know, but there's a tumour there'".

At just seven-months-old, little Rocky was diagnosed with Retinoblastoma in both eyes - an eye cancer that occurs when nerve cells in the retina develop genetic mutations. 

Retinoblastoma most commonly affects young children, but can occasionally occur in adults. 

The young family were then told that children with Retinoblastoma were at risk for the first two years of developing a trilateral tumour - an inoperable tumour in the middle of the brain that occurs if the tumour jumps out of the eye and onto the optic nerve (which runs into the brain).

"It was very overwhelming," Kara admitted.

Fortunately, the MRI came back clear, meaning Rocky's brain hadn't been affected. However, that was just the start for the brave little boy who immediately began treatment, going through six rounds of chemotherapy.

After two years of trying various treatments - including cryotherapy and having chemotherapy injected directly into his eye - unfortunately doctors told the family the only course of action was to remove the eye.

Given the risk that the tumour could spread to Rock's brain, Kara said the family felt positive about this outcome. 

Rocky and Kara after his eye removal

Rocky and Kara after his eye removal Photo: Kara Sefo

"We're a pretty resilient family and we've never doubted Rocky's recovery. We were optimistic Rocky would have his eye removed and be fine."

The family was looking forward to life getting back to normal, but unfortunately the removal meant that he had to undergo a further six rounds of chemo to kill any of the cancerous cells that may have jumped out of the socket.

The eye was removed six weeks ago, with doctors wanting to start chemo two weeks later, but after COVID-19 hit the family asked for a three month break to keep him safe at home to build up his immune system before they start again.

Rocky was fitted with a reformer eyeball so the eye muscles could form around it, which Kara said was "big and googly".

Rocky and Giselle

Rocky and Giselle Photo: Kara Sefo

Rocky who turns three in October is "a normal little boy".

"This child is tearing our house up," Kara laughs "He can see just fine. We've had to put child locks on everything which we didn't have to do with our daughter".

Despite everything her family is going through, Kara is grateful for Rocky's situation and says it's even helped them become a healthier family.

And now, Kara is trying to raise awareness about this "terrible cancer" and to show parents how a "simple test can be done at home".

She has set up a Facebook page and is urging parents to "trust their gut instinct" if they think something is wrong with their child and get it checked.

"I'm not intending to freak anyone out, especially those with young babies, but early detection is key".

Retinoblastoma rarely occurs after age five and if caught early, has a good chance of being treated effectively.

Things to look for include eye misalignment, consistently-enlarged pupil, poor vision, pain in the eye, and irises of different colours. You can also download the White Eye Detector app for iPhone.