Jack was an all action kid. Bubbly and energetic, he was always doing something and willing to try anything. His mum, Viv, says that from the day he was born, he was full of life and always ‘on the go’. “He could never sit still,” says dad Alex.
When Jack turned nine, something changed. The energy was replaced by periods of being absent and dazed. He became so sensitive to light he couldn’t look at an iPad. Viv and Alex took Jack to a neurologist, who agreed to do an MRI. The test showed a large brain tumour.
“I saw it on the screen and I said ‘Tell me, please, that it’s not what I think’”, Alex says. The tumour – classified as a low-grade glioma – had grown very large, but was operable. A successful operation followed and Jack was given a positive prognosis. Viv and Alex were overcome with relief.
“We thought: Thank you God. We are so lucky”, says Viv. Within three months, Jack was back to himself, had returned to school and the ordeal looked like it was over.
But just over a year later, he woke up with a terrible headache and started vomiting. “That’s when the nightmare began”, says Viv. “We went to the hospital and basically never left.”
This time was much worse. Jack was screaming with pain. It was so unbearable the pain management team couldn’t treat him. “He said to me ‘Why am I in so much pain? Why can’t they stop this pain?’” says Viv. “I hope no one ever has to see a kid in that much pain.”
A raft of scans and other tests were run, but nobody could work out what was making Jack so sick. Another brain operation revealed that there was no clearly visible tumour to remove, instead it was everywhere from the bottom of his spine to the top of Jack’s brain.
Fluid was building on his brain, causing immense pressure and resulting in the side of his head popping out. Lumbar punctures became a weekly requirement to relieve the pressure and provide temporary relief from the pain.
For Jack and Viv, to see their vibrant young boy bed bound was truly frightening. This was not the Jack they knew. “To see him so motionless and just no zest for life, it was really frightening because we don’t know Jack that way,” says Viv.
Jack’s condition was rapidly deteriorating and he was running out of options. Chemotherapy was not working. He was no longer able to walk and was close to losing his sight. Alex recalled. “At one point Jack asked me ‘Am I going to die?’”Jack before he was treated through the Zero Childhood Cancer Program
Jack was enrolled on the Zero Childhood Cancer program, a national clinical trial for children with high-risk cancers. Samples of Jack’s tumour were sent to the labs at Children’s Cancer Institute, where researchers analysed Jack’s tumour with the latest technology. They were able to identify a specific genetic mutation called BRAF V600E, which was likely to be driving its aggressive growth. They then discovered a combination of drugs that could target the mutation, and a new personalised treatment plan was recommended.
Within a matter of days, Jack’s condition improved. He was sitting up in bed, wanting to move around. In seven days, he stood up. “It was miraculous. In just days Jack was transformed back to himself,” says Viv.
Six weeks later, he was not only out of the wheelchair, he was playing tennis and riding his bike. “He went from harsh treatment to a couple of pills a day,” says Alex.
Bright and fun loving, Jack is back into everything, even winning a first and second place in his school’s athletics carnival – an amazing feat for someone who had been so sick. Viv explained, “Today, you wouldn’t know he had been ill, never mind that he’d had a brain tumour!”
Viv and Alex are incredibly grateful for Zero Childhood Cancer. Jack just turned 12 and they are thrilled to see him so healthy. “We got to celebrate another precious birthday with our son,” says Viv. “And I hope that, because of Zero Childhood Cancer, there will be many more to follow.”