Thomas

As a baby, Thomas was often unsettled and clingy, never wanting to leave his mother, Abby. But despite needing regular comforting, he became a regular, bubbly and energetic toddler.

The first real sign that something was wrong came when Thomas was two and a half years old. He began to consistently feel unwell and vomited a lot.

After becoming sick during a family holiday, he was taken to hospital and transferred to Monash Children’s Hospital, where an emergency MRI scan revealed Thomas had multiple tumours on his brain and spinal cord. Even though the tumours were slow growing, many were located in areas that are inoperable. This significantly limited treatment options.

Parents Abby and John were crushed. Breaking the news to family that their little boy had cancer was difficult, but John says the hardest thing of all was telling Thomas’ sister Lucy, then aged four.

Thomas went into surgery, and John and Abby had an anxious six-hour wait.

“Basically, it’s a situation where you’re waiting for someone to tell you that your child could be dead,” explains John.

The operation went well, but it was still unclear which type of cancer Thomas had.

Thomas developed complications, suffering hydrocephalus (fluid on the brain) which needed surgery to insert a shunt to drain the fluid.

As a result of the tumour and surgery, he lost a significant amount of eyesight.

Weeks turned into months, and months turned into years. Thomas was in and out of hospital, suffering bouts of vomiting and needing multiple surgeries to clear his blocked shunt.

Scans were done every three months, then six months, to monitor his progress. Frustratingly, a precise diagnosis still proved elusive, and Abby and John were in despair.

It was then that Abby and John found out about ZERO. “The oncologist said, ‘Let’s look at what genetic mutation is causing his cancer, and see it from a completely different angle’,” says Abby.

With Thomas getting sicker and in agonising pain, they were overcome with relief to find out he’d been accepted into the trial.

“I don’t know what we would have done without it,” says Abby. “There was no other option for us.”

“The work that these guys are doing, it actually changes people’s lives.”
– Abby, Thomas’s mum

A sample from Thomas’ tumour was sent for analysis by the ZERO team. Fortunately, the analysis showed a mutation believed to be driving Thomas’ cancer, and the ZERO team was able to find a therapy capable of targeting the mutation.

Thomas accessed a paediatric clinical trial using a gene therapy drug called Afatinib. His acceptance into the trial was only possible due to the ZERO program, which included a personalised analysis of Thomas’ tumour sample.  As part of the ZERO program, Thomas was also enrolled in The Luminesce Alliance PREDICT Cancer Predisposition Screening trial. The trial found that as many as 16 per cent of trial participants had reportable genetic variants thought to be responsible for their cancer, demonstrating the importance of precision medicine in assisting children like Thomas.

It was a rocky first couple of weeks. Thomas suffered severe gastrointestinal side effects and had to discontinue treatment. However, after regaining some strength, he was able to start again.

In January 2020, after two months of treatment, Thomas’ brain scan showed a noticeable improvement.

Over the following days, John and Abby were delighted to see Thomas’s energy levels pick up, his headaches go, and his appetite return to normal.

Thomas’s treatment lasted two years. Now 10 years old, he has been off treatment for 12 months and remains happy and healthy. His scans are stable.

“It’s made a huge difference to us. It makes you so thankful for the little things again. We’ve been reminded just how precious life is.”
– John, Thomas’s dad