Ciara Ryan is testimony to the amazing work being done at the Royal Children’s Hospital. Her parents shared their story as the hospital’s annual appeal gets under way.
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MELINDA Wilson knew in her heart something wasn’t right.
Call it a mother’s instinct.
Her youngest daughter, Ciara, was a mess — the seven-month-old had been sick for five months and had seen doctors, specialists, naturopaths and chiropractors.
The consensus was silent reflux but the Baranduda mum didn’t think it made sense.
Her desperate pleas prompted one doctor to tell them to “suck it up”.
And then one night in August those nagging doubts became a parent’s worst nightmare.
Ms Wilson had sat on the lounge and noticed Ciara’s leg trapped against the armrest.
It should have hurt, she thought.
She put her daughter on the change table, lifted her legs in the air and let go. They simply flopped back down.
Ms Wilson pinched them but still there was no reaction.
After 12 hours and a night in the emergency ward at Albury hospital, the pair went to the Royal Children’s Hospital and Ciara was diagnosed with neuroblastoma, a tumour pressing on her spine.
Today Ciara, 14 months, is improving at home in Baranduda but the tumour remains “a ticking time bomb”, Ms Wilson says.
That day back in August, Ms Wilson and her partner, Aidan Ryan, shared a sense of disbelief and relief, although the diagnosis was a dire one.
“When Ciara was first diagnosed we were told that the damage was done and that she would never walk again,” Ms Wilson said.
“But within a couple of days’ treatment with steroids she started to move her legs and so a biopsy confirmed it was neuroblastoma and chemotherapy started.
“The Royal Children’s was just incredible.
“They had doctors waiting for us, a social worker to help us.
“Within an hour of us being in Melbourne they had found the lump on her back.
“I was expecting to be down there for three days but on the Monday the oncologist told us we would be there for three months.
“After that it became a roller-coaster, your life is on hold and you are juggling the kids back on the Border.
“I had two older daughters.
“Surgery was not an option for Ciara.
“And the chemo was doing her more harm than good.
“After two rounds, about mid-October, they decided to stop the chemo and focus on physio, trying to get her legs moving.”
Mr Ryan said they were blessed with being in Ronald McDonald House, the hospital doing all in its power to make it easier for the couple.
“Our job was simply to focus on Ciara,” he said.
“You have an individual room, there is a sofa, a bathroom, there are fridges with the kids’ bottles labelled.
“You don’t have to do a thing.”
Ms Wilson said their time in Melbourne taught them to savour every day.
“One day I got upset when the hospital stuffed up her MRI basically through a lack of paperwork,” she said.
“I was really upset, devastated really — it meant we couldn’t come home.
“This dad walked past and said ‘you’re not having a very good day’ and I’m like ‘I’m all right’ and asked him how he was and he told me he had lost his son that morning.
“Here was I crying over a stupid scan. It is so very confronting and so very sad.
“Your only escape is your room. There is a communal area where you can sit but you are exposed to everything — people screaming down the phone, having fights with each other, families losing their children.
“I doubted myself and thought I should have done more.
“It just felt like no one was listening to us.”
Ms Wilson said when she now looks at photographs taken last year, Ciara looks sick but she didn’t think so at the time.
“Ciara was seven months old and under five kilograms, her face drawn,” she said.
“The doctors say the pain must have been excruciating and the only pain medication she was getting was Panadol.
“We now know her coping mechanism was to cling to Aidan or me.
“We became her pain relief.”
Today, it’s a case of one little step at a time.
“Most of the time I’m happy — we have our down days — but she is improving,” Ms Wilson said.
“Ciara has responded well to treatment but it is hard to see other kids her age up and walking and we still have this cloud over our head.
“Ciara has MRIs every two months and at the moment the tumour is sitting there and considered stable.
“But it is a ticking time bomb.
“It can grow and spread without any real reason.
“We just have to live with that.”
