‘It’s not fair’: Family to move overseas as childhood cancer treatment not available in Australia

An “unfair” bureaucratic loophole means a young family has to raise $350,000 and possibly move overseas to access treatment for their six-year-old boy battling a rare cancer.

Danielle and Andrew Pudoxkin with their kids Benji 1, Isabelle 8 and Xavier 6. Picture: /Russell Millard Photography

A family of five is considering moving overseas to ensure access to cutting-edge treatment not available in Australia for their son, who was diagnosed with life-threatening childhood cancer.

Danielle Pudovkin is desperate for her “baby” Xavier to have means to clinical trials after he was diagnosed with stage four neuroblastoma – a rare form of childhood cancer – when he was three years old.

“We’ll have to move to America,” the St Agnes mum-of-three said.

“We know that we’ll be able to get the treatment that he needs, but we shouldn’t have to do that.”

The young family is considering the huge move despite a life-changing announcement by the federal government.

Federal Health Minister Mark Butler announced earlier this month that every Australian child and young adult with high-risk neuroblastoma will have free access at Australian hospitals to a DFMO (difluoromethylornithine) – a medicine shown to reduce the risk of relapse and improve the survival of patients suffering high-risk neuroblastoma.

However for Xavier DFMO is no longer an option as he is in remission and does not currently have the disease, despite the fact there is a chance of relapse.

“I’m a bit jealous,” Ms Pudovkin said. “When the news came out my phone was blowing up because everyone was like, ‘this is great news for Xavier’ … well no, it’s not”.

“What I’m trying to do is say to the government, ‘hey there are these kids that relapse and we need help’.

“It’s not fair that we have to fundraise all this money to give our kids the best outcome.”

Danielle Pudovkin is considering moving her family to America to ensure her son will have the treatment he deserves. Picture: Russell Millard Photography

Minister Butler’s office confirmed to The Advertiser they are happy to speak with the Pudovkins to see if there is anything they could do to assist the family.

Xavier, who is now six, has already travelled to the US, with his mum, grandmother and siblings, in March this year to Memorial Sloan Kettering Cancer Center in New York City to be administered a vaccine to prevent the neuroblastoma from growing back after he entered remission in October 2023.

The vaccine is part of a clinical trial, the only one in the world, designed for children and young adults who have fought the cancer to prevent its regrowth.

He is set to continue the treatment until 2027 and must return to New York City a further six times.

The Pudovkin family will pay $350,000 for Xavier to take part, this does not include the cost to fly to America or the accommodation, food and other travel expenses.

“We have to fund this 100 per cent,” Ms Pudovkin, 36, said.

The rising cost of living and fear of Xavier relapsing has meant Ms Pudovkin is considering the possibility of her family relocating to the US permanently to ensure Xavier has access to the treatments he needs.

To undergo the clinical trial, it will cost $350,000 out-of-pocket. Picture: Russell Millard Photography

Xavier was first diagnosed in March 2021 and relapsed in March 2023. Picture: Russell Millard Photography

Xavier was diagnosed with the disease in March 2021. He underwent many rounds of chemotherapy and an intensive surgery where doctors removed 100 per cent of the cancerous tumour from his abdomen.

He also underwent a stem cell transplant and radiation, before he was deemed cancer-free in September 2022.

Unfortunately only six months later, in March 2023, cancerous spots were found in his abdomen and his neck.

He underwent intense treatment and surgery yet again and was cleared in October 2023.

“I decided the best course of treatment for Xavier … to keep him in remission was to take him to Memorial Sloane and Kettering, so MSK in New York for a vaccine trial,” Ms Pudovkin said.

“We continued with immunotherapy until March and then we took off to New York in March.”

Unfortunately, although Xavier has neuroblastoma, he cannot undergo DFMO because he has relapsed. Picture: Russell Millard Photography

Despite continuing to undergo treatment to remain in remission Xavier is thriving at school, which he has finally been able to attend regularly since being diagnosed.

“He missed out on a lot of daycare, he missed out on a lot of kindy and then he relapsed in reception,” Ms Pudovkin said.

“He just said to me ‘Mum I’m so happy, I am so happy, I can go to school, I am so happy that I can play with my friends’.

“He’s having a normal life.”

His mum hopes he can continue to stay on this path and remain cancer-free.

If you’d like to donate to Xavier’s treatment, you can here.

Originally published as ‘It’s not fair’: Family to move overseas as childhood cancer treatment not available in Australia