Rafael Oaten’s mother shares reality of tumour treatment that saved her son’s life

Young Rafael Oaten is lucky to be alive, but his battle to be here has changed his life – and that of his family – forever.

Rafael Oaten was diagnosed with stage four high-risk neuroblastoma in 2021. Picture: John Gass

Young Rafael Oaten is lucky to be alive, but his battle to be here has changed his life – and that of his family – forever.

It is a tough reality that his mother feels gratitude, grief and guilt over almost every day.

Raf was diagnosed with stage four high-risk neuroblastoma – a rare and aggressive cancer that develops from immature nerve cells – at age seven.

He had been complaining of a sore stomach and had lost 20 per cent of his body weight before doctors discovered a large tumour in his abdomen, and the cancer spread throughout his little body.

His shock diagnosis in 2021 at the height of Covid border restrictions forced his family – mother Natalie, father Mick and little brother Sam – to pack up their lives in Lismore and move to Queensland for treatment.

Rafael and his family moved from Lismore to Brisbane for his treatment. Picture: Supplied

Mrs Oaten and Raf were isolated for four months in the Queensland Children’s Hospital to give him the best chance of survival.

Mrs Oaten has opened up of the harsh reality of Raf’s gruelling 20-month treatment journey of chemotherapy, surgery, stem cell transplants, radiation therapy and immunotherapy, sharing candid and confronting photos.

Incredibly, Raf has been in remission for 19 months.

But those same treatments that have kept him alive have had lifelong impacts on the now 10-year-old.

The radiation irreparably damaged his spleen, meaning he will need antibiotics for the rest of his life.

The chemo caused permanent hearing loss and he now wears hearing aids, while the combination of treatments rendered him infertile, robbing him the chance to have biological children of his own.

“Parents would do anything to save their kids,” Mrs Oaten said.

“My goal, was to get him through treatment, and we would deal with what we had to at the end of it.

“We didn’t talk about the hearing loss, the spleen, his memory, because we were so busy trying to save him.

“I was told he’s not going to be able to have kids but I was like, ‘Honestly, if you can get my kid to an age where that is even a conversation that I need to have, then I will have it.”

Mrs Oaten said she never discussed with her young son his long-term prognosis.

“All Raf knew was that he had a lump in his body that shouldn’t have been there, and we had to go through all these treatments to get rid of it, and at the end of it, we would then work out what we were going to do with the rest of our life and his health,” she said.

Children with a high-risk neuroblastoma have a 50 per cent survival rate at five years, with a 50 per cent chance of relapse.

Mrs Oaten said she was so grateful to still have her son, knowing some children on the same ward never made it home.

But there was still guilt and grief.

Rafael’s treatment left him with hearing aids and left him unable to have children of his own some day. Picture: Supplied

“We’re incredibly lucky – he still walks, talks, he’s still himself,” she said.

“But I suppose there’s also that component of me that says ‘This is not how it’s meant to be’.

“There’s always going to be that grief for the life that he’s not going to have.

“When he comes home devastated that he’s done poorly at something at school, because his memory is just not there, and he hates on himself for looking different, or he just wants to be like all the other kids.

“When he gets really angry, and he’s like, ‘Why don’t you just let me die? I don’t want to be like this’.

“It’s really, really hard to hear that. But we make those (treatment) choices with the best information that we have at the time, but we don’t know the severity of the impact that’s going to come out of that.

“Would you prefer a deaf kid or a dead kid?

“It would be really nice to not have to make that really brutal decision.”

More than 1000 children and adolescents, on average, are diagnosed with cancer each year in Australia.

Cancer kills more children than any other disease in Australia – on average, 150 die every year.

Of those lucky enough to survive, a devastating 80 per cent endure long-term or even lifelong effects due to the high toxicity of treatments that were originally designed for adults.

Developed using AI, the Children’s Cancer Foundation has launched a powerful new campaign illustrating the brutal reality of cancer treatments on children, like Raf, by juxtaposing small patients undergoing treatment with large clinical equipment designed for adults.

Raf and his mum were in isolation at Queensland Children’s Hospital for four months. Picture: Supplied

The campaign hopes to raise awareness of the urgent need to fund medical research that identifies curative treatments for children with cancer that are much gentler on young and still developing bodies.

In 40 years, only 12 drugs have been approved for childhood cancer, compared to over 500 for adults over the same time.

CCF inaugural chair Professor David Eisenstat, who is also Children’s Cancer Centre director at the Royal Children’s Hospital Melbourne, said treatments were improving but were still predominantly adapted from adult therapies.

“Everything that people like me have been doing for decades has been really to get better treatments, but now we’re dealing with the costs of our success,” he said.

“It’s almost like a kitchen sink therapy for the kids with the most advanced disease, where they get chemotherapy, surgery, radiation, high-dose chemotherapy with autologous stem cell rescue, immunotherapy and then differentiation therapy.”

He said that “kitchen sink” approach has helped improve mortality rates.

Rafael Oaten with his dad Mick and his little brother Sam. Picture: Supplied

But global efforts were underway to develop smarter and targeted therapies and antidotes to counteract the damaging side effects that lead to long term consequences for survivors.

“It’s really the era of possibility … as we identify these toxicities, we’re going to be developing therapies or antidotes,” Prof Eisenstat said.

“We’re looking for better ways to harness the immune system.

“This is a particularly key point, I’d say in children’s cancer research, where we really need to dig deeper and go hard.

“We now have a critical mass of researchers here in Australia at the various children’s hospitals, research institutes and universities that are poised by working together to make significant advances.”

Natalie Oaten with her sons Rafael, centre, and Sam. Picture: John Gass

Prof Eisenstat said one area Australia was leading the world in was proactive measures to preserve fertility in young cancer patients while the treatment research continued.

“We’re aggressively banking eggs and sperm for our children post puberty, and those who are prepubertal, they’re undergoing fertility preservation procedures,” he said.

Prof Eisenstat said further research was also aiming to prevent recurrence and improve long-term outcomes by targeting the very origin of diseases.

Since 1992, CCF has raised over $74,000,000 to support children and families impacted by cancer.

A spokeswoman for federal Health Minister Mark Butler said the Albanese Government was investing $143.4 million to extend two world-leading precision medicine programs for children and adults with cancer.

She said a $112.6 million investment was supporting the Children’s Cancer Institute to extend and expand the “ZERO Childhood Cancer program” (ZERO), and expand it to be available to many young people aged 19 to 25 with pediatric type cancers.

The Children’s Cancer Foundation has launched a campaign illustrating the reality of cancer treatments for children using AI images like this.

A child enrolled in ZERO has samples of their cancer and normal tissues sent to CCI and partner organisations, where scientists and clinicians analyse it at a molecular genomic level so they can identify which treatment and drugs are most likely to be effective.

The spokeswoman said federal government had also secured funding so every Australian child and young adult with high-risk neuroblastoma could continue to have free access at Australian hospitals to a promising medicine not otherwise available in here, known as DFMO.

“DFMO has been shown to reduce the risk of relapse and improve survival of patients suffering high-risk neuroblastoma,” the spokeswoman said.

“The cost of treatment using DFMO ranges from $500,000 to $700,000.”

Through the Medical Research Future Fund, the federal government has also awarded more than $132 million to childhood cancer research.

This was in addition to the $168.7 million invested by the National Health and Medical Research Council between 2015 and 2024.

To donate, visit: childrenscancerfoundation.com.au

 

Originally published as Rafael Oaten’s mother shares reality of tumour treatment that saved her son’s life