Kristen thought her little boy Raphael had a fish bone stuck in his throat but doctors said nothing was wrong. Then she found out it was far worse than anybody imagined…

A Sydney mum’s worst nightmare became a reality when her toddler, Raphael, was diagnosed with cancer after years of unexplained breathing issues.

The heart-wrenching diagnosis was only discovered when his mum pushed for answers, fearing he had choked on a fish bone.

Raphael, now three, was a happy, energetic baby who loved music, dancing and Cocomelon.

But from just eight weeks old, his mother Kristen noticed something was a little off. 

‘I woke up at 5:30 in the morning to feed him and he was grunting. I held him up, and he wasn’t quiet – he was struggling. I said to my husband, “I think he can’t breathe”,’ Kristen told FEMAIL.

Panicked, the parents called an ambulance, and Raphael was rushed to hospital in extreme respiratory distress.

Doctors managed to stabilise him and diagnosed rhinovirus, a common childhood illness.

Given his family history of asthma, doctors assumed his breathing difficulties were linked to underdeveloped lungs and dismissed the episodes as something he’d likely outgrow.

But Kristen wasn’t convinced.

Over the next year, every time Raphael caught a cold, he ended up in hospital struggling to breathe.

Then, on September 29, 2023, when Raphael was one year and nine months old, everything changed.

That night, Raphael had shown no signs of illness.

But after his bath, Kristen’s husband called out in alarm: ‘I don’t think he can breathe.’

Kristen had fed the kids fish for dinner and worried that Raphael had swallowed a bone she missed while preparing the meal.

Raphael’s older sisters would also sometimes play with beads – something their mum forbade around the toddler – so Kristen was also concerned one was lodged in her son’s throat. 

At the hospital, she insisted on an X-ray of his chest, neck, and throat – only for doctors to find something far worse.

‘It was strange because Raphael wasn’t gagging or vomiting or anything like that. 

‘They came back and said there was a mass on his left lung. At first, they thought it could be pneumonia.’

It was the start of a devastating weekend of uncertainty.

With limited staff over the long weekend, further testing was delayed.

But as the days passed, oncology teams got involved.

‘I suspected it wasn’t actually pneumonia because the doctors hadn’t adjusted any of his medication,’ the mum said.

‘But still – I was very optimistic leading up to it. I never thought it could be anything serious.’ 

Then, a CT scan confirmed the worst: Raphael had a tumour wrapped around his sympathetic nerve and main heart artery.

‘Rhinovirus is quite common, but the weight of the tumour on his lungs made the respiratory distress worse,’ Kristen said. 

Doctors believed it was neuroblastoma, an aggressive childhood cancer.

Kristen and her husband George were shattered.

‘I never thought we’d be the ones they’d come back to and say, ‘No, it is a tumour. No, it is cancer’.’

Raphael underwent surgery, but due to the tumour’s location, doctors could only remove around 50 per cent of it.

‘It’s stage two neuroblastoma,’ Kristen explained.

‘Now, he has to have scans every three months to monitor if it grows or spreads.’

The couple’s other children – Samira, 8, Gabriella, 7, and Joseph, 6 – quickly picked up on the seriousness of their little brother’s condition.

‘They asked us, ‘Is Raphael going to die?’ Kristen recalled.

‘We had to explain what neuroblastoma is, that it has a low survival rate – but that Raphael’s case is different.’

While Raphael doesn’t yet understand his diagnosis, his siblings do.

‘They know there’s something in his body, even though it’s not making him sick right now.’

Kristen, meanwhile, is constantly on edge.

‘I don’t sleep properly. I wake up three times a night to check on all my kids, but especially Raphael. I spent months just hovering over him, my hands on his stomach, my ear to his mouth, listening to him breathe.’

The stress and anxiety of the past year have taken a toll.

‘After his surgery, we had a break from hospital, but I started panicking. I saw a couple of bruises on his legs while I changed his nappy – which is totally normal for a toddler – but I spiralled. 

‘The panic kicked in. I thought, ‘Is it growing again? Will we have to do this all over?’

‘When you’re in the hospital, you can just ask the next doctor or nurse you see if everything’s fine. You don’t have that when you bring your sick child home.’

Her doctor reassured her, but the fear never fully goes away.

‘For months after the diagnosis, I’d start questioning every new bump or vein I’d never noticed before.’ 

Kristen and George are thankful for the support they received from friends and family during one of the most difficult times of their life. 

‘Everyone was around, whether it was offering to pick up our children from school, look after them at home, cooking us food.

‘Our phones were constantly going off, there was so much love and faith around us.

‘There were times where I’d try to pray and couldn’t focus – but I knew there were people around praying for my son.’

Despite it all, Raphael remains a lively and energetic little boy.

‘He’s full of beans. He’s got a personality bigger than his body – he sings, he dances, he loves Ninja Turtles. He’ll walk up to anyone and start a conversation.’

Kristen and George, who run their own building business, now prioritise every moment with their kids.

‘We’ve always put our children first, but now, George will leave a job site just to make it to an assembly or a sports carnival. We don’t take anything for granted anymore.’

Raphael still faces an uncertain future, but for now, his family is holding onto hope – and treasuring every moment.