How little Raphael survived the killer cancer of Australian children

The Elias family had to be strong when Raphael was diagnosed with a childhood cancer which claims more lives of Australian youngsters under five than any other. Read how he survived.

Raphael Elias, who underwent surgery after being diagnosed with stage 2 neuroblastoma, is a huge Parramatta Eels fan and dreams of playing for them when he’s big.

When Raphael Elias was 12 months old and struggling to breathe, his concerned mum Kristen had to push for an X-ray – she thought he may have had a fish bone stuck in his throat.

The X-ray revealed a mass on his lung, and Raphael was diagnosed with stage 2 neuroblastoma, a childhood cancer which claims more lives of Australian youngsters under five than any other.

“Because the day of this breathing episode Raphael wasn’t showing any illness symptoms, and we had fish for dinner, I was convinced it had to be something in this airway,” Dundas mother of four Kristen, 33, said.

“His sisters had also been beading that day and I thought potentially he may have put a bead in his mouth without me knowing.

“Once the X-ray results came through, we weren’t convinced he had pneumonia because he would have been quite unwell, but we also didn’t think it would be tumour – we thought it would more than likely be a scare that would be ruled out.

Raphael Elias, who is now 3, was diagnosed with stage 2 neuroblastoma at 12 months old.

“Westmead Children’s Team was great. The testing started immediately after the long weekend and, once the CAT scan confirmed a tumour, the oncology team were talking us through everything and I think it was at that point reality hit and we became very emotional and requested to go home before the biopsy and testing started.

“We needed to come back as a family with our children, process the road ahead and bond back together before everything started to roll on.

“We didn’t know how it was going to unfold.”

Raphael and his mum Kristen Elias in hospital.

Raphael underwent a successful surgery so they could remove 50 per cent of the mass, with the rest remaining.

Today the three-year-old requires no further treatment beyond the surgery and is under close observation with regular scans.

“It hurts and it’s hard, but our faith is the centre of our family and helped us through,” Kristen continues.

“My husband George and I had to also be strong for our older children and reassure them that whatever road we take, everything will be OK and together we will get through it. It really shook us up.

Raphael Elias with dad George.

“We turned into parents getting out of bed four or five times a night to check on the children, and especially Raphael – making sure he’s breathing, that he’s OK, most times breaking down in tears while watching him sleep. We became nervous wrecks.

“If there was a bruise I saw on his leg that I didn’t see him bump to get, or he was what I thought irregular breathing, or just a mark or slight twitch, I’d panic.

“The three months between scans I’d be so nervous until we had the next to reassure everything was steady.”

Despite the challenges, Raphael’s laughter still fills the room as he plays with his big brother and sisters, Samira 8, Gabriella 7, and Joseph, 6.

He loves Power Rangers, Spider-Man, and Ninja Turtles, and his eyes light up when he sings along to Benson Boone’s Beautiful Things, or anything from Moana.

He’s also a huge Parramatta Eels fan, dreaming to play for them when he’s big.

Gabriella, Raphael, Joseph and Samira Elias.

“Raphael is doing great,” his proud mum says.

“He is your everyday crazy, fun and wild toddler – always has a smile on his face and has a bigger personality than his size.

“He is obsessed with his dad and doesn’t show any signs of his neuroblastoma, even though it’s still quietly sitting there.”

To other parents going through similar nightmares, she suggests finding families with similar diagnosis and speaking to them.

“One thing we struggled with was we didn’t know of anyone going through the same kind of cancer, with the kind of surveillance plan Raphael was assigned to,” she says.

“A lot of children were in treatment. As you know, the survival rate for neuroblastoma is low.

“His survival shows how important research is – it clearly shows in Raphael’s case.

“Many years ago he would have had aggressive treatment from diagnosis but time has shown that the stage, DNA of the neuroblastoma and partial removal with heavy surveillance can be sufficient at this point.”

Neuroblastoma Australia are raising much needed funds and awareness for lifesaving research in the upcoming Run2Cure in Sydney on April 6, when over 5,000 participants, including Raphael’s family, will take over The Domain for the cause.

Register to be part of the 21.1km, 10km, 5km, 3km or 1km little heroes walk, or donate at run2cure.org.au