Thomas' story

It makes you so thankful for the little things. We’ve been reminded just how precious life is.

- John, Thomas' dad

A bright and bubbly toddler, Thomas seemed fine until December 2014, when a family holiday at the beach turned into a trip to hospital… then another, and then another.

Before diagnosis

As a baby, Thomas was often unsettled and clingy, never wanting to leave his Mum, Abby. But despite needing regular comforting, he became a normal toddler, an energetic little boy.

Thomas receiving treatment in hospital bed


The first real sign that something was wrong came when Thomas was two and a half years old. He began to feel unwell and vomited a lot. When Abby and her husband John took Thomas to hospital, they were told he probably had gastritis. The lethargy and vomiting continued. Abby noticed Thomas' eye looking strange and the decision was made to transfer him to Monash Children’s Hospital, where he had an emergency MRI.

Thomas receiving treatment in hospital bed


John and Abby were told a lesion had been found on Thomas’ brain. When they asked what that meant, the doctor said it was a very large mass. Abby says she had always thought of cancer as an old person’s thing, and found herself thinking “How does my two-year-old boy have cancer? That’s ridiculous.”

But worse news was to come. Thomas had multiple tumours spread throughout his brain, as well as on his spinal cord. Even though the tumours were slow growing, many were located in areas that were inoperable. Abby and John were crushed.

They sat us in a room. I remember seeing a box of tissues on the table and thinking: ‘What is this room?’

- Abby, Thomas' mum

Thomas smiling in hospital bed


Thomas went into surgery, but while the operation went well, it was still unclear which type of cancer he had. A sample from his tumour was sent to Melbourne, and another to Perth. Frustratingly, a precise diagnosis proved elusive. Meanwhile, Thomas developed complications and needed surgery to put in a shunt to drain fluid from his brain. He lost a significant amount of eyesight, and started bumping into things, including other children.

No end in sight

Weeks turned into months, months turned into years. Thomas was in and out of hospital, needing multiple surgeries to clear his shunt which kept getting blocked. Abby and John were despairing. Then Thomas’ regular MRI scan showed up a noticeable mass growing in his brain. The diagnosis still wasn't clear. Abby says that's when the doctors started thinking: ‘We’re not entirely sure how to treat this.'

As a parent, it was too hard to even process, thinking that there may be no way forward. We were devastated.

- Abby, Thomas' mum

Joining ZERO

It was then that Abby and John found out about the Zero Childhood Cancer Program (ZERO). With Thomas getting sicker and in agonising pain, they were overcome with relief to find out he’d been accepted on the program.

Analysis of Thomas' tumour showed a mutation believed to be driving the cancer, and a matched therapy was found. Thomas began treatment with a gene therapy drug called Afatinib.

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.

I don’t know what we would have done without ZERO. There was no other option for us.

- Abby, Thomas' mum


Today, Thomas is eight years old and still receiving the gene therapy. His tumour has shrunk, and he is no longer in debilitating pain. While the damage to his eyesight is permanent, he has been able to return to activities he enjoys, and he and his family are hopeful for an ongoing return to more regular daily life.

We’re in a position where we can potentially put a lot of this behind us, and that’s fantastic.

- John, Thomas' dad

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