Oncology patient Emily Borg was cancer-free when she died at age five.
His immune system had been destroyed by the treatment designed to save his life, so when he contracted a rare fungal infection weeks later, his body was unable to fight it.
The best antifungal available was not approved for use in children, and even if Emily’s doctor requested its use on compassionate grounds, it was likely to be rejected.
By August 2023, the infection had reached Emily’s brain, causing six aneurysms and an ultimately fatal stroke.
Emily Borg, 5, died from a rare fungal infection after her immune system was compromised by treatment for liver cancer.
“In the end, it wasn’t the cancer that took her life, it was the treatment,” Emily’s aunt Kate Cantrell told AAP.
“All everyone seemed to say was, ‘Emily was very unlucky.'”
Dr Cantrell wants to ensure this never happens to another Australian family and is calling on the government to invest more in safer, kinder and more effective treatments for children with cancer.
When she was four and a half years old, Emily was diagnosed with a rare and particularly aggressive form of childhood cancer, neuroblastoma.
The doctors were forced to throw the treatment sink at him.
One of the medications Emily was given, thiotepa, was so toxic that her father had to bathe her every four hours.
Luckily, his body responded perfectly.
She was declared to have no evidence of disease, but due to the high probability of relapse, Emily had to undergo a bone marrow transplant that would destroy her immune system.
The medical team assured her loved ones that Emily was in the best possible position.
Since then, his family has wondered if they made the right decisions, but they soon discovered that Australian children had comparatively few options.
Australia’s treatment protocol for neuroblastoma has only undergone one change in the last decade, says Neuroblastoma Australia chief executive Lucy Jones, meaning patients have not been able to replace more toxic drugs with newer, safer alternatives. .
Treatments for childhood diseases are also not as commercially viable, so Australian pharmaceutical companies tend to focus on common adult cancers.
However, in the United States and Europe, pharmaceutical companies receive government funding to research childhood cancer, giving those regions greater access to innovative, world-leading solutions that leave less significant consequences.
Bureaucracy can also block access to life-saving drugs, which must undergo clinical trials in Australia even if they are found to be effective in the United States and Europe, with the entire approval process taking an average of 18 months.
Even then, many will not be approved for children.
“All it does is slow down access to that medicine and cost lives while people wait,” Ms Jones said.
As a result, families sometimes pay hundreds of thousands of dollars to send their children to hospitals abroad.
From the moment Emily was diagnosed, her family began looking for half a million dollars to travel to New York to receive a vaccine.
“Australian families are crashing and burning,” Dr Cantrell said.
Emily and her aunt Kate Cantrell pose for a photo as her family calls for red tape to be cut for a drug that could have saved the five-year-old’s life.
“I never thought, until Emily was diagnosed, that a child could be disadvantaged by living in Australia, the so-called lucky country.”
The government has provided $60 million to fund Zero Childhood Cancer, a program that offers genomic cancer testing to all children with the disease.
It has also offered grants for childhood brain cancer research, committing $20 million to research into diffuse intrinsic pontine glioma (DIPG) in February, and $15 million to research into drug development for prostate and prostate cancer. childhood cancer such as neuroblastoma.
While Ms Jones applauded the funding commitments, for funding to have a significant impact, each childhood cancer would need around $50 million a year due to clinical trial costs.
But if the government created a $100 million research fund for childhood cancer and ensured a collaborative approach, it could address a range of diseases and the consequences of common treatments, he said.
Dr Cantrell paid tribute to Emily in Parliament when he headed a Senate committee in late January.
Emily referred to the tumor as “the monster in her belly” and once ran away when she heard a knock on the door, fearing that the specter had returned.
Not yet knowing how to write, he texted his aunt with emojis, liberally using the symbols for poop and vomit.
Emily also played pranks on the oncology staff, filling her urine sample cups with apple juice, and hiding toy snakes in hospital drawers.
“He was a little firecracker,” Dr. Cantrell said.
‘I miss his energy, the lightness and laughter he brings, I miss the sound of his voice.
“All childhood cancers are rare, but they’re not rare when it happens to you.”
Life line 13 11 14
Children’s helpline 1800 55 1800 (for people aged 5 to 25)