Brave little Qld warrior Hugo’s battle against rare tumour

A brave little Queensland boy has had four operations in four weeks as he battles a rare and deadly tumour.

Hugo Long’s big, beautiful eyes “talk” to his parents and “stare deep into their souls with the brightest of lights”.

But behind those eyes is a brain stricken with a rare and deadly tumour.

Ollie Long and Brooke Carter know the prognosis is grim for their firstborn child, who has had four operations in four weeks, but say he is a “little warrior”.

“All we wanted was a healthy baby and we thought we had that,” said Ms Carter, 37, of Lennox Head.

“He was hitting all the milestones but at 11 weeks our community nurse noticed his head circumference had jumped way up.”

An ultrasound scan confirmed Hugo had hydrocephalus, a build-up of fluid in the brain cavities, and he was flown from Lismore Base Hospital to Queensland Children’s Hospital.

Oliver Long and Brooke Carter with baby Hugo Long. Picture: Richard Walker

“It all moved so fast,” Ms Carter said, “and it was really scary thinking he had hydrocephalus but when the neurosurgeon said he also had a mass on his brain, it was terrifying.”

Hugo had a lifesaving fluid drain ahead of a biopsy on September 27 in which 20 per cent of the tumour was removed.

Eradicating the entire mass has been impossible due to its precarious location on the brain stem.

“We were hoping for a miracle that it was benign,” Ms Carter said through tears, “but we got confirmation on the 30th it was an atypical teratoid rhabdoid tumour (ATRT).

“Our hearts are broken but we are finding strength in Hugo’s bravery. He manages to keep smiling and throw us a giggle.

“My dad says he talks to you with his eyes, Ollie says he stares deep into our souls with the brightest of lights, and the nurses say they have crushes on him.”

Ms Carter, a marketing consultant for Westpac, said the hardest part was not knowing the outcome.

Baby Hugo Long. Picture: Richard Walker

“We are holding on to hope, but it’s so difficult when all you’ve had is bad news about your beautiful, perfect baby.”

Hugo, now 16 weeks old, has started chemotherapy to try to shrink the tumour ahead of further surgery.

His parents, staying nearby at Ronald McDonald House, are in awe of the Children’s Hospital team.

“We can never thank them enough. Some days there are 50 different people coming through Hugo’s room to help him; I’m not even kidding,” Ms Carter said.

Neuro-oncologist Tim Hassall, the lead on Hugo’s case, said 10-15 people in Australia were diagnosed annually with ATRT.

Oliver Long and Brooke Carter with baby Hugo Long. Picture: Richard Walker

Dr Hassall said it had only been clinically recognised in the past 20 years due to advances in molecular testing, and children afflicted were mostly from newborn to late primary school age.

“Through our oncology unit and the Children’s Brain Cancer Centre (funded by the Children’s Hospital Foundation) we are able to gain access to new drugs as they enter clinical trials.”

He said further molecular analysis of Hugo’s tumour was being done at Pathology Queensland and also with colleagues in Sydney.

Friends of Mr Long and Ms Carter have started a GoFundMe account that has raised almost $100,000 – tinyurl.com/Hugosbattle