By Russell Bennett
CIARA Nelson counts herself lucky that she took a nasty fall and hit her head during a netball game last June.
It led to the discovery of a tumour in her brain stem, which would have otherwise continued to go un-noticed. It was the accident that could yet save the Pakenham 17-year-old’s life.
Ciara has a tectal plate glioma in the base of her brain and it’s inaccessible through traditional surgery or biopsy. The treatment options she does have include a range of extremely costly procedures – and she’s not sure which is the right one to take.
But yet, when Ciara describes her plight, the resilient young woman with a smile bright enough to light up a room keeps coming back to the same word… “lucky”.
Lucky – despite fighting for her life. Lucky – despite all the uncertainty about which treatment is the right one. Lucky – despite her family home being burgled shortly after her diagnosis.
Through the break-in, the Nelsons have seen the worst of some people. But the astonishing, uplifting support they’ve received from the wider community through Ciara’s battle has underlined to them the best of the human spirit.
From far and wide – across not only Melbourne’s south-east, but right around the globe – friends, family and complete strangers alike have come to embrace the Nelsons, to wrap their arms around them in their hour of need.
Ciara has a GoFundMe page set up to try and raise as much money as possible towards her treatment. The Nelsons, who don’t have private health insurance, are looking at gamma knife surgery in Sydney as an option – which is around $27,000. Cyberknife treatment in Perth, or even proton therapy in the United States are also being investigated, while the Nelsons are also planning to take Ciara to meet with Dr Charles Teo – the world-renowned neurosurgeon and founder of the Cure Brain Cancer Foundation.
“In Ciara’s case, the tumour’s position in the brain is in the worst spot you could have one,” mum Colleen Nelson told the Gazette at their family dining table.
“You can’t get to it.
“At the moment, she hasn’t got any symptoms – she gets tired and has a couple of issues with her memory – but apart from that we don’t have any major ones yet.
“They said the first thing to go would be her eyesight but that hasn’t started yet.
“I understand where Ciara’s tumour is and we’ve accepted that part of it. Ok, we can’t get to it, but the fact that it changed so dramatically in three months was a massive concern.”
Ciara is a prodigiously-talented netballer in programs including Boroondara in the Victorian Netball League, Beaconsfield in the South East Football Netball League, and the sports academy at her school – Rowville Secondary College.
It was during a game for Boroondara’s development squad mid-last year where Ciara’s legs were taken out from under her and she hit her head on the court.
“It was a complete accident – it was just one of those things that can happen,” Colleen said.
“I watched her that night for any obvious signs of concussion and she was ok, so after four hours or so I let her go to sleep. She was a bit sore and sorry for herself the next day but by the end of that week she started vomiting and had massive headaches. I thought it was a delayed concussion.”
It was when Colleen took Ciara to hospital that doctors discovered the tumour.
After having a procedure to help drain fluid from her brain, Ciara had two MRIs three months apart. The second scan – in late November – showed the extent of the tumour.
While in hospital, the Nelsons met the family of a four-year-old boy – Ethan – with a brain tumour. They soon formed a special bond.
“If we have leftover money from the GoFundMe (campaign), I want it to go to people like Ethan and his family,” Ciara said.
So far, donors have raised over $69,000 for her in under a month.
“There are so many families out there doing it tough,” Colleen said.
“That’s the hard thing about it. Ok, you can accept the diagnosis and we can try and do everything we can to contain her tumour but there are a lot of others in a worse position than us too.”
Colleen was the netball vice-president at Beaconsfield last year and now she’s been on both sides of the inspiring support community clubs provide when they rally around those in need.
“We’ve asked the neurosurgeons if Ciara can keep playing netball and they said yes,” she said.
“We’re trying to go along with life as normal as possible and in the meantime try and get the right treatment but the answers to that aren’t available to us right now.”
Ciara is a private person and feels overwhelmed by the support she’s received to this point. She knows she’s facing the fight of her life – one she may not win – but alongside her mum and sisters Jaime and Rylee, and buoyed by the support of thousands, she’s determined to make the most of each and every day.
To donate, visit www.gofundme.com/ciara-nelsons-fight
