Happily playing with his trucks and dinosaurs, Noah is all smiles. His mum Laura says he’s such an easy-going little guy you’d never know how much he’s had to endure.
At just 2 1/2, Noah has undergone five brain surgeries, six months of chemotherapy and six weeks of daily radiotherapy.
In early 2023, Noah had been unwell with bouts of extreme lethargy, irritability, vomiting, gait unsteadiness, progressive neurological symptoms which then developed into an eye condition known as Papilledema.
After repeat trips to Emergency with no resolutions, Laura took things into her own hands and saw a private Paediatric Ophthalmologist who diagnosed Noah with increased intracranial pressure. This meant there was swelling of the optic disks which ultimately caused Noah’s eye to turn crossed eyed.
Tragically, in February that year, Noah was diagnosed with malignant Grade IV pineoblastoma brain tumour.
He was only 16 months old.
“We were in complete shock that our baby who had been normally well and happy was diagnosed with such a rare and aggressive brain tumour. After rounds of IVF, he was our miracle baby conceived naturally. It was a devastating blow,” Laura said.
Noah was immediately admitted to hospital and underwent two resection surgeries on his brain and a cerebrospinal fluid (CSF) diversion to drain fluid from the brain due to hydrocephalus.
After his surgeries, Noah had intensive chemotherapy for six months. He spent the bulk of this time in hospital and suffered major complications post-surgery including infections resulting in sepsis and seizures.
Noah then endured six weeks of radiotherapy- five days a week requiring a general anaesthetic for every dose.
Noah’s gruelling hospital treatment has been extremely distressing for the family. Laura had to relocate to be nearer the hospital and take extended leave from work to care for Noah full-time. In the same time period, Laura became a solo mum.
Laura said it was heartbreaking seeing her little boy so unwell spending months in ICU and on the Oncology ward and having endless needles, surgery, blood transfusions, central line dressing changes, tests and procedures. Yet, despite everything, Noah would always ‘go with the flow,’ and never complained.
“The hardest part for Noah has been missing out on simple everyday activities such as going to the park, being with family and friends, swimming and going on family holidays,” she said. “Instead of playing in the park, Noah was either in hospital or at home as he was so unwell.”
Due to Noah’s prolonged ICU admission, he had to re-learn how to walk and hold his head again.
In hospital Noah was often hooked up to an IV pole and was immuno- compromised so couldn’t leave his hospital ward due to the risk of infection. On the weekends when it was a little quieter, Laura would often take Noah to a little grassy patch on the hospital grounds to get some sunlight and grounding healing energy from the earth.
While Noah’s life has been consumed by the pain of hospital, Captain Starlight and the Starlight Express Room helped bring moments of joy and happiness.
The family especially love the special guest performances in the Starlight Express Room. Laura said when the Sydney Symphony Orchestra played in the Starlight Express Room their music had such a positive impact on Noah.
“Starlight has bought so many smiles and provided endless hours of entertainment for Noah - it makes an incredible difference to the overall wellbeing of kids in hospital,” Laura said.
There were more smiles coming Noah’s way when he was granted his Starlight Wish.
After missing out on playing outside and doing all the things he loves, the family decided on a special holiday to Rottnest Island to see the Quokkas!
Laura said Rottnest Island was the perfect spot to relax and recharge but still know they were close to a major hospital.
Noah had so much fun meeting the Quokkas, going on a boat trip, playing putt putt golf and riding around the island in a bike trailer.
“We created lots of memories on Noahs’ wish and captured some amazing pictures which we will remember forever,” Laura said.
The family live with ongoing uncertainty and Noah faces further cytology tests and MRIs to monitor his condition.
While hospital and treatment remain part of their lives, the family is so thankful that Starlight will be there too.
“Without Starlight hospital would be isolating and lonely. Starlight provides respite to us parents so we can pop out get some fresh air and reset ready to take on the day in the hospital ward. We are incredibly grateful for all the support Starlight provides to sick children and their families to help make things brighter and more manageable.”
