WHEN Lukas Rosenbaum was diagnosed with medulloblastoma – a fast-growing, high-grade brain tumour – the last thing his parents were thinking about was his diet.
Aged just two, Lukas faced six months of high dose chemotherapy, followed by a year of “maintenance chemo”, and then radiation on his developing brain.
And that was if everything was going to plan.
“The chemo that he had was pretty brutal,” says his mum, Irene Rosenbaum.
“It pretty much knocked him out and he was bed bound for most of the six months. He lost a lot of strength in his legs. He stopped eating, lost a lot of weight, was very fatigued and pretty much vomited most of his way through the six months.”
Thankfully, this tough regimen worked and Lukas is now in remission.
However a year spent on either a nasogastric tube or PEG feeding tube – Lukas was extremely nauseous throughout his treatment – had its consequences.
After struggling to keep his meals down for so long, Lukas had developed a severe aversion to eating. He completely stopped eating and drank only water.
“It was huge,” Irene says. “Once we got through the crisis, we were left with this.
“He became turned off by the sight of food.”
Lukas simply refused to eat and, as a consequence, he was tube fed for almost three years.
“We tried everything, but we never really got anywhere. The advice we got was very ad hoc. There was no plan.”
That all changed when Irene and her husband Ralf were told about Dr Lisa Barrow and the Growth and Nutrition Clinic she oversees at Sunshine Hospital.
The highly specialised service is run by a team of paediatricians, speech pathologists and dietitians and helps children, just like Lukas, to be weaned from their long-term tube feeds.
“Unfortunately, sometimes children develop oral aversions because they have missed windows of opportunity to learn eating skills or have had negative experiences around vomiting or intrusive procedures associated with their illnesses,” Dr Barrow says.
Lukas Rosenbaum with his parents Ralph and Irene. Picture: Brian Cassey
Irene says that meeting the Sunshine Hospital team was a big breakthrough: “We had total faith in Lisa because she had a plan, and that was what we’d been missing”.
Within three weeks of joining the program and having his PEG removed, Lukas was “taking in enough” to sustain him. Now aged 7, Lukas’ diet continues to expand.
He is one of more than 50 children whose lives have been transformed to thanks to this Western Health service, which is the only public program of its kind in Australia.
The Western Health program helps wean a wide range of paediatric patients from tube feeding, including premature babies, and children with conditions as varied as autism, congenital heart defects and metabolic disorders.
The Greatest Need Project is an online story-sharing website with two major goals – to help patients facing significant hardship and disadvantage, and to facilitate research, at Western Health.
As a patient, Lukas is sharing his story in bid to help those at Western Health who need it most.
By making a donation on Lukas’ behalf – and sharing his story on social media – you are making a difference too. Thank you.