SUPER RORY’S BRAVE FIGHT
IT is not usual for Rory Berry to be dressed like he has just walked off the set of a Disney movie.
Open his bedroom door and it’s most likely the five-yearold and his older brother Hayden will be in one of their dozens of fancy dress costumes, acting out elaborate scenes from their imagination.
“Especially since starting school and wearing the same uniform every day, the days he’s not at school he’s even more inclined to dress up,” mum Gemma Berry said.
“They love the reactions they get from people, but I’ve often wondered if it’s also a little bit of an escape from reality as well.”
Upon meeting Rory on the day oncology ward for his latest round of chemotherapy, he had arrived at the Royal Children’s Hospital dressed in a pilot’s costume, complete with captain’s hat and wooden flight controls. He then added a Captain Sparrow’s outfit over the top before being hooked up to his intravenous dose.
With his shag of orange hair, Rory looks like the healthiest boy on the ward. The lower doses of chemo he is on, over a much longer period than a usual cancer diagnosis of 68 weeks, largely keep the Geelong boy looking like every other child in his prep classroom.
But this time last year, a sudden and dramatic tiredness that came on, as well as his unsteadiness on his feet, were the first signs to Mrs Berry and husband Josh that something was up.
Scans at the RCH uncovered a 5cm long, 1.5cm wide tumour between his spinal cord and its covering, where the neck and shoulders meet.
Given its precarious position, only enough could be surgically removed to relieve pressure on the spinal cord and for a biopsy.
RCH oncologist Jordan Hansford said this sample confirmed the network of tumours throughout Rory’s brain and along his spine is a disseminated glioneuronal tumour. Only 200 cases of this rare and incurable cancer have been identified worldwide.
With most of his tumours dormant at the moment, they are hoping chemotherapy can keep them inactive.
As the medical team does its part, the Geelong couple has found their purpose in the team. They have enlisted a team of 13 other runners to join them in the Great Ocean Road Marathon, raising at least $16,500 so far for brain cancer research.
“I don’t think either of the boys appreciate this is with us for life,” Mrs Berry said. “I just wish for him a long life and that he can keep doing all the things other kids do.”
To donate to the Good Friday Appeal go to goodfridayappeal.com.au