It all started with a routine check-up.
“When they said Westpac Helicopter we knew things were serious,” Brooke Carter told Yahoo News Australia on Thursday, recalling the “confronting” moment her 11-week-old son Hugo Long was loaded onboard. “I sat next to Hugo and held his hand the entire way. He had on these big ear muffs. It didn’t feel real.”
Just 24 hours earlier, Ms Carter and her fiancé Ollie Long, 34, had been settling into their new life as parents at their Lennox Heads, NSW, home.
“He was born with no medical complications. He was reaching all his milestones and was very cheeky from the start,” the 37-year-old said. It wasn’t until a standard examination by a community nurse on September 14 that the couple realised something could be wrong with their first child.
“She noted his head circumference had grown dramatically in four weeks. It wasn’t an alert but we came up with a plan to go to the local hospital the following day for ultrasounds,” Ms Carter recalled. “From there he just deteriorated very quickly.”
After Hugo began vomiting, the couple rushed him to their GP, where another nurse agreed the cause of the swelling could be hydrocephalus — an accumulation of cerebrospinal fluid that occurs within the brain.
But it was when he underwent an ultrasound at Lismore Base Hospital the following day that things “got very, very serious”, Mr Long said. The tests revealed the 11-week-old baby had a mass the size of a golf ball in his brain, preventing the fluid from draining.
As Mr Long watched his partner and son being loaded into the Westpac Helicopter destined for the Queensland Children’s Hospital later that night, confusion and concern began to set it. “What would the road look like ahead?” Ms Carter pondered as Mr Long followed the chopper north in his car to meet them.
Baby diagnosed with rare, aggressive tumour
Seven months later and the family have yet to return home. The 37-year-old mum said the flight was the “quickest but longest 50 minutes” of her life, and when they arrived at the hospital, there were a team of about 30 medical professionals waiting to greet them.
“I remember the bay in the emergency room we were in and Ollie turning up. It was a very confronting experience, something that I don’t think will ever leave my mind,” she said. Soon after, Hugo underwent several operations to release some of the pressure off his brain and retrieve a biopsy of the mass.
The following day he was diagnosed with a grade 4 atypical teratoid rhabdoid tumour (ATRT) — an extremely rare, highly malignant and aggressive tumour that grows in the central nervous system. The couple say that due to its position, it was inoperable and doctors warned there have only been 18 cases ever reported in Australia.
“The survival rate is abysmal. The hospital has never treated an infant [who had the tumour] and survived,” Mr Long said, adding that there is “not a gold standard” of treatment and not enough research on different options for children.
“Options are so much more limited. Radiation is a key treatment option for this tumour but is not something you can give to a baby due to the detrimental effects. We were left with an inoperable tumour and one kind of defence which is chemotherapy.”
'He just kept fighting'
Wanting to make sure Hugo would have a good quality of life, the pair said they let their son guide them. “He showed us he wanted to continue, he’s just kept fighting so we’ve kept fighting,” Ms Carter told Yahoo.
After a brutal seven months of intensive chemotherapy, which was made for adults and caused the infant to suffer greatly, doctors revealed Hugo’s tumour had shrunk by about 98 per cent.
Although they are grateful for the happy news, given the aggressiveness of the mass, it only needs one cell to grow back quickly, the parents said. “The two per cent that remains has gone through five rounds of chemotherapy and it’s still alive, it’s the hardcore stuff that doesn’t want to die,” Mr Long said.
Hugo is now undergoing a trial targeted drug therapy to hopefully remove the remaining cells.
“I know we’re asking for a miracle in terms of what happens now because that’s the only way Hugo will survive,” the 34-year-old dad said, adding that depending on how it goes, the family hope to return home soon and make the most of every day, including taking Hugo back to the beach.
Parents call for more research
Ms Carter and Ms Long said they decided to speak out about their son’s journey, which they share on an Instagram account named My Sunshine Warrior, to help educate people and spread awareness.
An Australian child dies of brain cancer every nine days, more than any other disease, according to the Children’s Brain Cancer Centre. “Despite advances in other types of childhood cancer, survival rates for brain cancer have made little progress over the past 30 years,” the website reads.
Mr Long said that while Australia “has an amazing healthcare system”, more needs to be done to help improve the survival of children with brain cancer.
Family and friends have created a GoFundMe to help Ms Carter and Ms Long as they rotate by Hugo’s bedside, but the couple has also urged anyone who wants to help to donate blood or to the Children’s Brain Cancer Centre.
Do you have a story tip? Email: firstname.lastname@example.org.