Levi is a part of everything we do. His incredible strength and courage inspire us every day.
- Kathryn, Levi's mum
Levi was kind and caring. Playful and fun. He had a cheeky grin that could lighten your mood and big brown eyes that drew you in. He loved his family, his friends and soccer in equal measure. But just after he turned 7, life for all who knew and loved him changed forever.
Pre-diagnosis
Levi was a loving and affectionate boy, always the first with a cuddle or a compliment. He loved playing with his mates, and was obsessed with soccer. As soon as he got home from school, he would head straight out to the backyard to kick a ball with his dad, Ben. If there was anything resembling a ball in the house – a pair of socks, a toy – he would kick it. Ronaldo was his hero.
Symptoms
The first sign that something was wrong came just after Levi turned seven. He looked to be going a bit cross-eyed, so Kathryn took him to get an eye test. He was referred to an eye specialist, who suggested an MRI scan. Just before Christmas, Kathryn was shopping for gifts when she got the call that would change everything.
They told me there was a mass on Levi’s brain, and to take him straight to Emergency.
- Kathyrn, Levi's mum
Diagnosis
Two days after Christmas, a biopsy of Levi’s brain tumour was taken for analysis. Due to the holiday period, there was an anxious wait for the results. Eventually Kathryn and Ben were called into the Kids Cancer Centre at Sydney Children’s Hospital, where they received the devastating news. Levi had diffuse intrinsic pontine glioma (DIPG), an aggressive and incurable brain cancer. The only thing left to do was to make memories.
Treatment
Levi had radiotherapy for six weeks. He began to experience excruciating headaches that would have him screaming in pain, followed by intense vomiting. He was then placed on an immunotherapy trial for six months, then a clinical trial of a new drug called ACT001. As the tumour grew, Levi’s appearance began to change. His face started to droop and he got very self-conscious about going to school.
He would say to me ‘Mum, my face looks weird.’
- Kathyrn, Levi's mum
In the 12 months that followed diagnosis, Levi endured brain surgery, an operation to insert a port-a-cath, 30 rounds of radiation, 14 cycles of immunotherapy, two months of an experimental drug, 11 MRIs, 2 CAT scans, countless blood samples and neurological examinations, and many, many trips to hospital.
Good times
There were many happy times, with regular family trips. Levi was able to live out his dream of seeing his idol Ronaldo play soccer in Paris. He was determined to keep doing the things he loved and would regularly run around with his mates. Somehow, he continued playing soccer despite his double vision, and was even doing flips on the trampoline as he celebrated his 8th birthday in November.
He was trying to prove to himself that even though his world was changing, he was still normal. He wasn’t normal – he was extraordinary.
- Kathyrn, Levi's mum
The final chapter
In mid-November, Levi’s legs started feeling wobbly. The family went with friends to watch Tim Cahill’s final game for the Socceroos, and Levi had to be carried. Over the next six weeks, his condition deteriorated rapidly as he was stripped of his basic functions one-by-one. His face and body ballooned, his speech slurred and his facial muscles became paralysed. Headaches racked him with pain and steroids induced personality change.
He was bedridden with headaches and nausea – he couldn’t even move his head without screaming.
- Kathyrn, Levi's mum
There was one last moment for Levi’s parents to be struck by their boys’ courage and determination. On December 15th, Levi won the class award for consistency at his school. His parents took him in his wheelchair to accept the award.
He walked all the way up to the stage to get his medal. Just the strength that would have taken him...
- Ben, Levi's dad
Towards the end, Levi knew he was dying. He just wanted to make it to Christmas. He’d ask ‘How many more days?’ Levi made it to Christmas, passing away six days later, on New Year’s Eve 2018. Despite the heartbreak, Kathryn and Ben say they have beautiful memories that they will take with them forever. “He’s a part of everything we do and every decision we make,” says Kathryn. “His incredible strength and courage inspire us every day.”
