He's a part of everything we do and every decision we make. His incredible strength and courage inspire us every day.
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. But at just seven, Levi was diagnosed with the deadliest childhood cancer, DIPG.
Levi’s Project is a world-leading research project being carried out by scientists at Children’s Cancer Institute, with the aim of developing Australia’s first-ever treatment program for children with DIPG (diffuse intrinsic pontine glioma). The project is being carried out by a dedicated team within the Brain Tumours Group.
Levi’s Project aims to make all the difference in the world to children with DIPG and their families, by offering hope where currently there is none. It is a bold ambition, but we have a bold plan to match.
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.
An easy-going child, Levi was the happy medium between brother Archie and sister Olivia. The glue that held the family together. A loving and affectionate boy, Levi was always the first with a cuddle or a compliment.
Levi was a typical boy who loved playing with his mates. He enjoyed all sports, but he was particularly 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. He played every chance he got, and if there was anything resembling a ball in the house – a pair of socks, a dog toy – he would kick it. His favourite player was Ronaldo, and he wore his number 7 jersey like a uniform.
The first sign that something was wrong came just after Levi turned seven. His eyes started looking different. He seemed to be going a bit cross-eyed at times. Kathryn, Levi’s mum, and Ben took him to get an eye test and he was referred to an eye specialist, who suggested an MRI scan.
Just before Christmas, Kathryn was shopping, preparing for one of the happiest times of the year with her family, when she got the call that would change everything.
“They told me there was a mass on Levi’s brain and some swelling, and to take Levi straight to the emergency department at Sydney Children’s Hospital.”
Two days after Christmas, a biopsy of the mass was taken for analysis. Due to the holiday period, they had an anxious wait for the results. Eventually they 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), the most aggressive pediatric brain cancer. There is no cure. The average prognosis is just 9 -12 months. The only thing left to do was to make memories.
Levi received radiotherapy for six weeks. He began to experience excruciating headaches that would come out of nowhere and leave him screaming in pain, followed by intense vomiting.
“The pain was so intense that it just wiped him out,” says Kathryn.
After radiotherapy, Levi was placed on an immunotherapy trial for six months. When the tumour started to grow again in September, they began another clinical trial with a new drug called ACT001.
Levi’s appearance began to be affected. His face started to droop. Levi would say, “Mum, my face looks weird.”
“He started to notice changes and get very self-conscious. Then he started to not want to go to school,” says Kathryn.
In the 12 months post-diagnosis, Levi endured one craniotomy (brain surgery) and biopsy, 30 rounds of radiation (complete with head in a mask and bolted to a table), an operation to insert a porta catheter, 14 cycles, or 6 months, of an immunotherapy trail, two months of another experimental trial, 11 MRI’s (almost one a month), 2 CAT scans, never-ending needles and blood samples, relentless neurological exams and many, many trips to the hospital.
There were many happy times. The family travelled regularly, and Levi was able to live out his dream to see his idol Ronaldo play in Paris. He carried the match ball out onto the pitch when Real Madrid played Paris Saint-Germain in a UEFA Champions League game.
Levi was determined to keep doing the things he loved. He would regularly run around with his mates, continued playing soccer despite his double vision, and was 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, and the cancer was getting the better of him, he was still normal. He wasn’t. He was extraordinary,” says Kathryn.
In mid-November, Levi started to notice his legs were feeling numb and wobbly. One night, the family went with friends to watch Tim Cahill’s final game for the Socceroos. Levi couldn’t walk properly and had to be carried. The next day, things deteriorated rapidly.
“He was bedridden with headaches and intense nausea. He could not even move his head without screaming.”
The next six weeks were horrific as one-by-one Levi was stripped of his basic functions. The tumour had taken over. This beautiful brave boy’s body was shutting down. Kathryn described the horror before her eyes.
“He took eight different types of medication several times a day – drugs for pain, constipation, nausea, swelling in the brain, lining the stomach, trying to kill the cancer. They could do nothing to halt the ballooning of Levi’s face and body, the slurred speech, the paralysis of facial muscles, the headaches that ripped through his skull like a freight train, or the steroid-induced personality change.”
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. Just a day or two before he lost his ability to walk, his parents took him in his wheelchair to accept the award.
“His name got called out and you could see how unsteady he was on his feet. He walked all the way up to the stage to get his medal. Just the strength that that would have taken him,” says Ben.
Levi knew he had brain cancer, and towards the end he knew he was dying. He just wanted to make it to Christmas. He’d cry, “How many more days? I want it to be tomorrow.”
Levi made it to Christmas. He passed away on 31 December 2018.
Despite the heartbreak, Kathryn, Ben, Olivia and Archie experienced beautiful moments 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.”