‘You’re my true love, mummy’: Little boy’s heartbreaking words a week before he died. Video / Supplied
It was two days before Christmas, little Levi Wheeler's favourite day of the whole year, and the eight-year-old was eagerly sharing his excitement.
"Santa's coming," his mum Kathryn Wakelin beamed, filming the two of them cuddling on a couch in a bittersweet video message, reports news.com.au.
Barely ayear earlier at the end of 2017, the young soccer-mad Sydneysider had been diagnosed with the aggressive brain cancer Diffuse Intrinsic Pontine Glioma (DIPG).
"I love you," he said, his voice faint. "You're my true love, Mummy, and you're always in my heart. And so is Daddy. I love you so much."
Just over a week later, on New Year's Eve in 2018, Levi's short life came to an end.
"That's what he was like all the time," Kathryn told news.com.au about his loving words.
"He was a gorgeous little kid. He was really sweet, really caring and very kind. He always thoughts of others. He was always giving compliments and cuddles."
Levi died on New Year's Eve in 2018, a year after being diagnosed with the aggressive brain cancer DIPG. Photo / Supplied
Levi was the glue between older sister Olivia, 10, and younger brother Archie, six, she explained, saying: "Archie and Olivia are the lively ones and Levi was the calming centre."
There were few clues that anything was wrong with her boy until he came home from school at the end of year two in 2017.
His teacher wanted to talk to Kathryn about his eye, he explained,
"Very occasionally it would look like he was going cross-eyed. It was strange but we didn't think too much of it. It was quite a sudden thing," Levi's mother said.
"He came home one afternoon and said his teacher wanted to talk to us about his eye. We took him to an ophthalmologist who sent us for an MRI, but said it would probably be fine. We got a call the next day that changed everything."
DIPG is the deadliest childhood cancer, with about 20 kids diagnosed each year.
There's no cure or effective treatment and given tumours grow on the brain stem, operating isn't an option.
The prognosis was that Levi had about a year. In the end he had one year and 10 days.
"That final year was what we now refer to as 'heartbreakingly beautiful'. It was extremely difficult to deal with, knowing your child is going to die. Living with it everyday was a stress and a torment that's hard to put into words.
"We tried to protect him and the other kids as much as we could from the reality. We tried to keep him safe and to just love him.
"We were fortunate that we could have some amazing times in that final year. He was doing well for most of that year — he was able to function for the most part. We travelled, he was still playing soccer, he got to do a lot. I think that shows his determination.
"It kind of showed us how to live. You realise how precious life is when your child's time is limited."
Levi was diagnosed with terminal DIPG in late 2017. Photo / Supplied
A couple of days before Christmas, Kathryn began recording a video on her phone of her and Levi chatting, capturing those beautiful words of his.
"Our family still watches it all the time," she said.
"We long for him when we watch it. It just shows what an incredible and loving boy he was.
"It's bittersweet. We feel incredibly lucky to have had him for eight years. As his parents, we were so in awe of the kind of kid he was. But we're devastated that he's not here."
The past seven months have been an emotional rollercoaster, with good days and bad, but Kathryn and Ben are now focusing on a new project.
Generous donations from family, friends and the community totalling $2.4 million are now funding a dedicated DIPG research team at the Children's Cancer Institute.
Levi's Project, as it will be known, will run initially for three years and begin its first clinical trial by the end of year one.
Kathryn Wakelin with her son Levi. Photo / Supplied
"There will be a total of three clinical trials over three years. We're excited about that. Clinical trials give you options.
"We feel incredibly privileged to be able to do this. It means a huge amount to us. It's about helping other kids to have a chance at childhood." The goal now is to raise more money to extend Levi's Project beyond its current time frame to continue the search for DIPG treatments and a cure.
Michelle Haber, executive director of the Children's Cancer Institute, said the average survival time after a DIPG diagnosis was just nine months.
"Due to enormous advances in medical research, the overall survival rate of childhood cancer has risen significantly," Professor Haber said. "However, some types of aggressive childhood cancers have devastatingly low survival rates."
Ben Wheeler and Kathryn Wakelin with their kids Archie and Olivia. Photo / Supplied
The incredible funding for Levi's Project was a "game-changer", she said, and will support life-changing research.
"We urgently need novel and innovative treatment approaches, which Levi's Project will help to provide," Professor Haber said.
"We have been able to grow samples of DIPG tumours in our labs and, after testing thousands of drugs, have identified five promising candidates for treatment.
"We believe that a combination of these drugs will be much more effective in treating DIPG, representing the first ever 'Total Therapy' approach to treat this cancer. Levi's Project will allow us to build on this research and take the results from the lab into clinical trials for children as soon as possible.
"We are incredibly grateful to Levi's family, friends and wider community for choosing to remember and honour Levi by joining our fight to end DIPG and all childhood cancers."
