Ollie has rhabdomyosarcoma.
It’s a long name for a diagnosis every parent dreads.
“It’s brain cancer,” the doctor said.
Rhabdomyosarcoma is an aggressive cancer with a high relapse rate.
Nathan and Naomi Jepson and their three children, Ollie, 7, Gracie, 5, and Marley, 2, moved from the Central Coast to Ellangowan two weeks before the floods.
And before they knew Ollie had cancer.
Nathan works for a news TV channel and Naomi is an artist. They liked the remoteness of the property and living “in the middle of nowhere” at Ellangowan.
During the February-March floods, their home had up to five metres of water around the house.
“Luckily the farmhouse was on high ground,” Nathan said.
“It was pretty scary.”
Nathan and Naomi started noticing unusual things about Ollie in February last year.
When Ollie played, he would stop for what he called a “brain-break” and have a nap.
In July, he had fluid build up in his right ear and they took him to a doctor.
In September, his eye started to wander, like a “lazy eye,” Nathan said. Ollie complained about headaches.
He went to doctors at Lismore and to an eye specialist.
Eventually, a diagnosis was made. Soft tissue cancer was found in Ollie’s head, neck and bladder.
The tumour under his right ear is inoperable because of the way it winds round his brain.
Since the diagnosis, Ollie has had a series of chemo and radiation therapy treatments.
He has been getting anxious about all the treatment and had to be strapped to the table during the PET scan on his brain.
“I’m scared,” Ollie had said.
“He has his good and bad days,” Nathan said.
On his good days, Ollie likes to draw mashups of animals. He uses bright colours to create a zoo or dolphins swimming.
The drawings were so cheerful, Nathan and Naomi turned Ollie’s drawings into clothing the family could wear.
Nathan’s sister set up a GoFundMe for Ollie’s medical expenses and for his wishlist – $46,553 has been raised of $50,000 goal.
A website was created called Internal Battle where people could buy Ollie’s drawings.
The family also started using costumes for chemotherapy sessions.
Ollie dresses up as different characters to make the experience more fun.
The costumes give him something to look forward to and they help with his social anxiety, Nathan said.
The website features a When I’m Better Wishlist for Ollie.
Some of his wishes are:
● sleepover at Taronga Zoo
● go dig for fossils
● whale watching
● learn to snow board
● go in a helicopter
● make t-shirts with art on them (tick)
● go to science museum
● go camping and roast marshmallows
● hold a koala at a reptile park
● hot air balloon ride
● swim with dolphins
Nathan has become an ambassador for Ronald Macdonald House and Red Kite.
He has given up work and is on a carer’s pension so he can be there for his family.
The toll of a cancer like this on a family is unimaginable.
Nathan said with Ollie’s tumour being inoperable they are taking things “day by day”.
“Maybe in five to 10 years, the research will be better,” he said.
The diagnosis is a jail sentence, Nathan said.
“We have to protect him as much as we can but we have to let him be a kid.”
Follow Ollie’s journey on his Facebook page.