It all began with a routine check-up but ended in a discovery of a massive brain tumour growing on an 11-week-old boy.
It was a horror revelation that parents Brooke, 37, and Ollie Carter, 34, had to face after welcoming baby Hugo into the world as they settled into their Lennox Heads home in northern NSW.
On September 14, Hugo’s newborn nurse made the alarming find during a routine check-up.
Ollie and Brooke Carter has revealed how a routine check-up on their baby Hugo led to a mammoth battle with an aggressive cancer where he was put through months of chemo and now their hope lies in an experimental drug (pictured Brooke and Ollie holding baby Hugo)
The discovery came after the 11-week-old began vomiting and was rushed to a GP where they said the swelling was likely caused by an accumulation of fluid occurring within the brain (pictured: Hugo)
Young Hugo’s head circumference was also growing rapidly, and ultrasounds revealed the swelling was a buildup of fluid in the cavities deep inside the brain.
An ultrasound revealed the baby had a mass the size of a golf ball in his brain, which stopped the fluid from draining, and he was flown to Queensland Children’s Hospital for treatment.
Hugo had several operations to release some pressure off his brain and so doctors could get a biopsy of the mass.
After the biopsy, he was diagnosed with a grade four atypical teratoid rhabdoid tumour (ATRT), a rare, malignant, aggressive tumour growing in the central nervous system.
The ultrasound at Lismore Base Hospital revealed the baby had a mass the size of a golf ball in his brain which stopped the fluid from draining and he was flown to Queensland Children’s Hospital for treatment (pictured: Hugo’s brain ultrasound)
Over the next three weeks, Hugo spent a week in intensive care and had three brain surgeries.
Only around 60 babies are diagnosed with ATRT each year around the world and there have only ever been 18 reported cases in Australia.
The odds of survival are so low the couple said Queensland Children’s Hospital had never treated an infant with the tumour who survived the treatment.
Friends of Ollie and Brooke set up a GoFundMe to help with the costs and to financially support the family while they are by their baby’s bedside.
‘Our hearts are broken, but we have found strength in Hugo’s bravery,’ Ollie and Brooke wrote on the fundraising page.
‘He has done everything we’ve asked of him and been so strong throughout it all.’
Baby Hugo began his chemotherapy a short time later and things only got worse when he contracted rhinovirus – a common viral infection – which meant he suffered through two weeks of constant fevers.
In December, the couple had their first bit of good news, the tumour had shrunk by 80 per cent.
Hugo was diagnosed with a grade four atypical teratoid rhabdoid tumour (ATRT), a rare, malignant and aggressive tumour that grows in the central nervous system
They were told his best chance of his survival was surgery, chemotherapy and radiation.
‘Unfortunately, radiation isn’t viable given Hugo’s age and his growing brain, and the tumour is still inoperable due to its proximity to the brain stem,’ Ollie and Brooke said.
‘ATRT tumours are rare and aggressive and, even when removed completely, have an 80 per cent chance of recurring in the first two years post-treatment.
‘We wouldn’t put him through this harsh treatment if we didn’t have the highest hopes.’
Hugo then went through three rounds of 40-day chemotherapy with triple the toxicity he originally had all while suffering through stints in intensive care as well as seizures and infections.
On April 4 Ollie and Brooke marked the six-month anniversary of their hospital stint by celebrating Hugo finishing his treatment.
‘Hugo has fought so hard; the most brutal fight – five gruelling chemotherapy rounds (of poisonous drugs made for adults, not tiny babies or children), of which three high-dose rounds were interrupted by persistent infections, seizures and time in intensive care,’ the couple said.
‘It was scary stuff, especially knowing that some babies have passed away during the same treatment. While it was all necessary to save Hugo’s life, the pain he endured is hard to reconcile.’
Only around 60 babies are diagnosed with ATRT each year around the world and there have only ever been 18 reported cases in Australia. Queensland Children’s Hospital have never treated an infant with the tumour who survived the treatment
The tumour shrunk by 98 per cent following chemo treatment, however, the remaining two per cent was resistant and if left unattended would kill Hugo in a matter of months.
So now the couple has one last option to pursue, a trial drug that aims to target the residual tumour cells and stop them from multiplying.
‘We know that Hugo still being here, smiley and happy, is our miracle. He has done remarkably well. We celebrate his courage and achievements every day,’ they said.
‘We’re optimistic that this trial drug will allow us to keep hoping for our miracle while focusing on Hugo’s quality of life.
‘We want to return to Lennox with our little boy and soak him up. He has lived in a hospital for six months.
‘It’s time for sunshine, grass and walks with our dogs – making the best memories and showing Hugo how beautiful life is.’
The couple also wants to raise awareness about the rare cancer by sharing their son’s journey on an Instagram account named My Sunshine Warrior.
An Australian child dies from brain cancer every nine days, 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 site states.
After chemo failed to eradicate the entire tumour the couple has one last option to pursue, a trial drug that aims to target the residual tumour cells and stop them from multiplying
