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A New South Wales mother is urging parents to trust their instincts after her son was initially turned away from hospital with symptoms caused by an aggressive and undiagnosed brain tumour.
It was earlier this month when Naomi Jepson first noticed something was amiss with her six-and-a-half-year-old son, Oliver.
"Ollie was watching TV on the sofa, and he was covering one eye," Jepson said.
"I turned the TV off and I said, 'What's going on? Are you okay?'"
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Oliver told his mum he had double vision, which made her concerned enough to put him and his two younger sisters, aged four and one, into the car and drive to an optometrist.
However, the optometrist did not have any available appointments until a week later.
Jepson and the three kids were due to leave for a family holiday in Lismore the next day.
There, they would meet dad Nathan, who had been working away from home for several months as a camera operator for NBN.
Jepson decided to go ahead with the trip, but halfway through the 10-hour drive from home on the NSW Central Coast, she saw something that made her very worried.
"I looked in the rearview mirror and I noticed that Ollie's eye had turned slightly inwards," she said.
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On the advice of her mum, Jepson called the national medical hotline, Healthdirect.
"They said I should get him straight to emergency to be checked over because it could be neurological," Jepson said.
As soon as they arrived in Lismore, Jepson took Oliver to the public hospital's emergency department, where they waited three-and-a-half hours without being seen.
"The nurse that night was beautiful, she said, 'You need to be seen by someone', but Ollie and I were just struggling to stay awake.
"So we went home and we came back first thing in the morning."
When they arrived the next morning, Jepson said she was greeted by a different staff member who told her they were likely to be waiting all day to be seen by a doctor.
"She said that it wasn't an emergency and she suggested that we go to a GP instead.
"I told her that we've been advised to come here by the (phone) healthline and she said, 'You're just going to be waiting all day.'"
Frustrated and worried, as Oliver's eye was still turned inwards, Jepson said she rang a local optometrist who agreed to see her son immediately as an emergency appointment.
"She did all the tests and said there was absolutely nothing wrong with Ollie's vision. But she said we needed to get straight back to emergency so they could check if it was neurological," Jepson said.
Armed with a referral from the optometrist, Jepson again took Oliver back to the emergency department.
A CT scan left doctors there puzzled.
"The main doctor that was in charge said that he and his team had been scratching their heads all afternoon as to what it could be and that he hadn't seen anything like it in his whole 20 years of working there," Jepson said.
"Which was scary, but I was glad that so many people were taking it seriously."
A few days later, an MRI scan revealed devastating news.
"The MRI showed that there was a big lump in the cavity near Ollie's ear. They told us it was a tumour, I've got no words for how we felt," Jepson said.
Oliver was airlifted from Lismore down to Sydney where doctors at the Westmead Children's Hospital diagnosed him with rhabdomyosarcoma, a rare brain cancer that forms in soft tissue.
The tumour's position in Oliver's brain means it is inoperable.
This week, Oliver began what is expected to be 12-18 months of chemotherapy, which will then be followed by radiation.
"The doctor said the tumour has only been there for three months … and that he has about an 80 per cent chance of survival, but they won't know if they've cured it for at least one to two years," Jepson said.
"I feel terrified and helpless, wondering what on earth the next 12 to 24 months is going to bring."
Jepson said her husband had quit his job so they could take turns being in hospital by Oliver's bedside and looking after their daughters.
Despite being so unwell, Jepson said Oliver had been extraordinarily brave.
"He's really been enjoying the one-on-one time with my husband and I and he's getting to play his (Nintendo) Switch and his puzzles – he has been in such high spirits."
Friends and relatives have rallied around the family, starting an online fundraiser which has so far raised almost $19,000 to help with their medical and living costs.
"The support has meant so much to us, I've got goosebumps just thinking about it and we are so thankful," she said.
Jepson said her sister had flown over from Perth to help, and the money raised by the fundraiser meant her husband would not be forced to go back to work immediately.
While the family is currently staying at Ronald McDonald House, Jepson said it was likely they would need to rent somewhere in Sydney while Oliver underwent his treatment.
Jepson said was also grateful for the advice she received when she called the Healthdirect phone line.
"Having that advice gave me the confidence to stand my ground. I hate to think what would have happened if I had waited a week to see a GP."
Oliver's story showed how important it was for parents to follow their instincts, she said.
"Trust your gut, you know your kids best at the end of the day."
Contact reporter Emily McPherson at empcherson@nine.com.au.
Source: 9News
