Leo Dilnot, Peregian Springs, fighting rare cancer, Pheochromocytoma tumour

A Sunshine Coast boy – known for his kindness, generosity, and strength – has been diagnosed with an extremely rare and aggressive tumour. Watch him speak about his diagnosis.

A Sunshine Coast mum has shared her family’s fears after her young son was diagnosed with an extremely rare and aggressive tumour, affecting only one in five million people.

The Peregian Springs mother knew something wasn’t quite right when her son Leo Dilnot, 12, started experiencing agonising pain, tortuous headaches, dizzy spells, and noticed his hands and arms were bright red with a racing pulse.

Leo Dilnot taking part in showing miniature horses. Picture – contributed.

Leo was officially diagnosed at the Sunshine Coast University Hospital on November 3, following months of ongoing symptoms.

His mother, Carly Dilnot, 43, who worked for the Queensland Police Service, said they were heartbroken and scared.

“We were then transferred to Queensland Children’s Hospital the next day (November 4) where a PET scan and MRI identified additional tumours and confirmed the suspected diagnosis,” she said.

Doctors would have to remove both of Leo’s adrenal glands – as he had two tumours in each.

“Leo will need life long hormone replacement therapy,” Mrs Dilnot said.

“Pheochromocytoma tumours are identified in two to eight people per million, and only 0.2 to 0.8 children per million … which is why I refer to it as one in five million.”

The beloved pre-teen is a year seven student at Nambour Christian College and a part of the miniature horseshow team.

Leo Dilnot in hospital. Picture – contributed.

His mother said she would never forget sitting in hospital with her son when doctors delivered the life changing news.

“I don’t even know how to put it into words … I wasn’t expecting it,” Ms Dilnot said.

As mother and son sobbed while holding each other, doctors explained the severity of Leo’s tumours.

“On the scans we could see that it was 4cm … bigger than the gland itself,” Ms Dilnot said.

“Seeing it really helped Leo come to terms with it and understand that he needed the surgery he was so scared of.”

Leo Dilnot having an MRI scan. Picture – contributed.

The past two weeks had been a rollercoaster of emotions for little Leo – who had moments of bravery, but also times where he broke down over missing his family and friends.

“He’s up and down. He’s got a reputation for being upbeat and happy in hospital but he also has his moments,” Ms Dilnot said.

“He’s just a kid who’s scared and really wants to go home … he’s scared he might not wake up from surgery.”

But his mother said doctors were confident he would survive.

A close friend of the family, Liz Campbell, created a GoFundMe campaign to support them financially and help find someone else who had the same type of rare tumour.

Leo Dilnot in hospital. Picture – contributed.

“We’re looking for anyone who could share their experience with this type of tumour,” Ms Dilnot said.

“It just feels impossible … we can’t find anyone who has been through the same surgery and treatment.

“What does life without adrenaline even looks like?”

Ms Campbell said Leo named the tumour ‘Bob’ to help him through his time in hospital.

“They were told the PET scan showed it was highly active and was the reason his blood pressure was so high,” she said.

“Bob is releasing excessive amounts of adrenaline into Leo’s system, blood tests showed his levels were at 7650 while normal ranges are 50 to 540.

“In spite of his easy going nature Leo has been in a state of fight or flight for weeks and his body has been working so hard to maintain it that his pulse rate and blood pressure are extremely high.”

Leo Dilnot showing a miniature horse. Picture – contributed.

More scans showed the other three tumours were similar – however smaller and not yet active.

“The doctors tell them they are likely to become active when Bob is removed and so the safest thing is to remove both adrenal glands,” Ms Campbell said.

“He is bed bound with short trips in his wheelchair allowed so that his blood pressure doesn’t rise too high.”

Leo’s surgery was booked for Tuesday, November 28.

Leo Dilnot with his three sisters. Picture – contributed.