On Christmas Eve last year 14-year-old Johey Basedow was given a death sentence.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
For the past 10 months the Year 8 St Peter's student has been in the fight of his life, combating a rare and aggressive cancer that no one else in Australia is believed to have.
But the Pelaw Main teenager is determined to celebrate his next Christmas with a cancer-free status and a clean bill of health after he receives specialist treatment in the United States - one of the only locations in the world to tackle Desmoplastic Small Round Cell Tumours (DSRCT). These are aggressive tumors that typically begin in the abdomen or pelvis and usually occur in white adolescent males.
Johey's mum Emma researched the condition which oncologists here know little about. "When we searched on the Cancer Council web page it didn't even come up," Emma said.
"About 15 years ago in the States doctors there were saying to parents they were sorry, there's nothing they can do for their children because this cancer is so aggressive. Chemo holds it back for a while but it just returns," she said.
Johey's initial prognosis was three years.
Emma's research revealed that a number of people had been treated for DSRCT in the US and a few hospitals there specialised in treatment.
She found Professor Andrea Hayes-Jordan - one of those doctors who were telling parents there was no hope. Now Prof Hayes-Jordan devotes her research to DSRCT.
She will perform Johey's surgery (expected to last between 14 and 22 hours) at UNC Chapel Hill Hospital, North Carolina, on November 19.
"I've read that patients who have the lining of their abdomen surgically removed, followed by washing the area with warm chemotherapy, do quite well. In fact 100 per cent of Prof Hayes-Jordan's patients don't have a recurrence in the abdomen after this procedure, but that doesn't mean it won't come back elsewhere," Emma said.
Professor Hayes-Jordan has seen Johey's scans and believes there is a good chance the procedure will prevent his cancer returning.
Johey's family (Emma, dad Scott and sister Isabella, 11) will travel to the States for Johey's treatment. They expect to be there for a month and now face a $200,000 debt which includes surgery and post operative care. The family's transport and accommodation costs are additional. A Go Fund Me page has been set up to help.
Emma, a Rutherford High teacher and Scott, an operator at Mt Arthur, have made substantial financial adjustments. "We're not ones to seek charity but you'd do anything to save your child's life."