For Mateo, treats don’t come much more special than a trip to the café with his mum. The youngest of two boys, six-year-old Mateo is a kind, gentle soul who loves playing UNO and following his favourite soccer team Real Madrid.
Up until last year, he loved karate, but a shock diagnosis changed everything.
Mateo had started to have problems with his vision, so his mum Ceffra took him for an eye test at the opticians. When Mateo’s sight was still not improving, Ceffra and dad Steve sought the advice of an ophthalmologist.
“I knew something wasn’t right, so I pushed for an urgent appointment,” Ceffra said.
Tests showed a swollen optic nerve and Mateo was referred to the children’s hospital for further tests.
Nothing prepared the family for the devastating MRI results. Mateo had a brain tumour and needed urgent surgery.
“We were in compete shock. We went from an everyday eye appointment to an emergency hospital admission and then to hearing the words brain tumour,” Mateo’s mum said.
The tumour was located in a difficult spot deep in the brain.
“Mateo underwent a gruelling 10-hour operation by the amazing Dr Sharon Lee (Head of Statewide Neurosurgical Service of WA) who performed a major craniotomy,” Ceffra explained.
Following the surgery, Mateo was in ICU for two days then spent the following five weeks in hospital; his mum never left his side and dad visited every day as he had to look after Mateo’s seven-year-old brother Jax.
“I slept at the hospital every night for five straight weeks,” Ceffra said. “It was so hard on Mateo to suddenly be in the unfamiliar world of hospital and away from his big brother Jax.”
Mateo was unable to open one of his eyes for the first few days, and his parents feared he may lose his sight.
Due to its challenging location, Dr Lee wasn’t able to remove all of the tumour. Mateo needed further targeted treatment and was accepted into a clinical trial with the aim of stabilising or reducing the tumour.
Mateo’s daily treatment regime is unrelenting with rounds of medications up to four times a day.
As a side-effect of the surgery, Mateo also suffered Pan Hypopituitarism – a condition affecting the pituitary gland which requires additional management with daily oral drops and a restricted diet.
“Our lives have completely changed,” Ceffra said. “As a family, we’ve pulled together to help each other but our family will never be the same again. We just take each day as it comes and try and adapt as best we can.”
Mateo had to spend Christmas in hospital and Ceffra said it was heartbreaking for the family not to be together at home celebrating as normal.
Amid the trauma of hospital, Starlight helped bring moments of happiness to keep Mateo’s spirits high.
“Mateo is so well natured, he has taken it all in his stride. Even at Christmas, he quietly smiled and said hospital was fun because of Starlight,” mum said.
The Starlight Express Room was a gamechanger and Ceffra said Mateo’s face lit up as soon as he entered the room.
Mateo loved playing UNO with the Captain Starlight and doing arts and crafts. The Captains also organised a special birthday celebration for Mateo in hospital.
“Starlight really brightens up everybody’s mood in hospital and makes the whole day easier.”
Pleasingly, Mateo has continued to recover from his surgery and his vision has improved. His treatment is ongoing including regular clinic visits and blood tests. The anxiety of every next scan takes its toll.
“We try and stay positive and be selective about what we say and how we say it to Mateo and his brother. They’re both still so little and we don’t want to worry or frighten them,” mum said.
Mateo has slowly started back at school and is looking forward to his next café outing with mum and maybe even a babycino.
Reflecting on their time in hospital, Ceffra said, “Starlight helped make the experience so much better. It took our minds off all the worries. It would have been awful without the lightness, brightness and entertainment that Starlight brings.”
