A year ago Ethan Davies was a textbook healthy toddler whose life revolved around the Wiggles, playing in the sandpit and a good appetite.
But within months he was fighting for his life as he underwent six operations, seven weeks of chemo-therapy and a gruelling 33 rounds of radiation therapy to remove a brain tumour wrapped around his brain stem and growing into his spine.
Parents Christie-Lee and Shannon Davies’ world came crashing down when they were told inJanuary that their son had a rare aggressive brain cancer known as ependymoma.
The large tumour blocked the flow of fluid into Ethan’s head and spine, explaining his language delay and unsteadiness on his feet.
Nine months after the diagnosis, the two-year-old has no visible signs of the tumour.
Although his parents know he is not out of the woods, they are grateful to doctors in Melbourne and Perth, particularly Princess Margaret Hospital neurosurgeon Sharon Lee, who painstakingly removed all but a few millimetres of the tumour to give
him the best chance of survival.
Mr Davies will talk about the impact of Ethan’s illness at the launch tonight of a scholarship for childhood brain cancer research, named after his son.
The aim is to help raise $150,000 for a trainee brain surgeon who will work with researchers at the Telethon Institute for Child Health Research using models of brain tumours to test new treatments.
Mr Davies still struggles to accept that his happy son might die from the disease.
“A while ago, I thought brain cancer was the sort of thing that only happened to someone else’s child — a sad story that you saw on television or read in the paper,” he said.
“I don’t have the words to explain how I cried every day and night for weeks after his diagnosis, the wrongness of my house without my son and the anxious wait during each operation.
“And, most of all, the confronting knowledge that for all of Ethan’s amazing progress to date, his brain cancer could very well come back and if it does his prognosis is poor.”
His wife, who is expecting twin girls in December, said they wanted to support Perth research that might help Ethan and other children.
“We wanted to do something that would contribute to their treatment, so when we heard about the institute’s work it was a perfect fit,” Mrs Davies said.
“Dr Lee had done such an amazing job for us we wanted to do something back.”
Consultant oncologist Nick Gott-ardo, from the institute’s brain research program, said survival rates for brain cancer had marginally improved but tumours such as ependymoma had a cure rate of only about 60 per cent.
“The most important factor that determines if a child will be cured is how good the surgery is in removing as much of the tumour as possible,” Dr Gottardo said.
“This scholarship will allow us to bring an up-and-coming surgeon into the laboratory for more seamless research and treatment.
“This is a special thing for Ethan’s family to do because they know this might not have any direct impact on his treatment but will undoubtedly help other families.”