When Annette Death’s three-year-old nephew successfully battled leukemia in 2018 there was every reason to believe they would not face it again.
But just three weeks after becoming Macedon Ranges’ mayor last year, Annette received the devastating phone call that the cancer had returned.
“It was scarier this time. Far scarier. He had beaten it once and we had hoped it wouldn’t return,” she said.
“I was on a train, returning from a conference for newly elected mayors and deputy mayors when my mum called. She was already crying and I knew something was wrong… when we hung up I was shaking.”
Thomas was diagnosed with t-cell acute lymphoblastic leukemia: an aggressive cancer that affects blood and bone marrow. It had returned with a large chest tumor.
The family’s apprehension at what lay ahead, distance between them and drawing from depleted resources made the news even more daunting.
“We could never have been prepared for what is unfolding before us,” Annette said.
“Our situation is not unique. Many families are facing trauma with childhood illness. My heart races the moment I step through the doors of the Royal Children’s Hospital and thunders in my ears as I get closer to the Kookaburra (cancer) ward.
“A myriad of emotions impact all at once, that results in feeling overwhelmed and helpless.”
In December, Thomas and his mum Natalie left home in Mildura to begin an 11-month stay at the hospital. It’s where the family spent both Thomas’s ninth birthday and Christmas.
Thomas underwent an intense round of chemotherapy and his brother Jacob was the donor for a life-saving bone marrow transplant.
The transplant has so far been a success and Thomas is nearing the end of more than 90 days in isolation recovery.
While his mum has been by his side, his dad Toby and siblings Jacob and Amy have been at home in Mildura anxiously awaiting updates. Thomas’s grandparents travel to and from Horsham to support when they can.
“Thomas hasn’t been able to see his siblings for a long time,” Annette said.
“It’s really hard for a little boy. He has been very unwell and withdrawn – not wanting to ‘facetime’ or talk.
“Doctors don’t say anything about prognosis – it’s just day by day. When you are living day to day there’s a little anxiety that comes with that.”
Annette said breaking the news about Thomas’s returned cancer to her own children, Alma and Valda, was difficult.
“I didn’t tell the kids right away,” she said. “As a parent you don’t want to cause unnecessary panic but at the same time you need to have those difficult conversations.”
For one of her daughters, a mole removal at the GP’s office had created stress. Posters about skin health spoke of moles and cancer risk, and conjured thoughts of Thomas.
“You always have to put on a brave face. They have so many questions and you have to make sure your conversations are age appropriate,” Annette said.
She said the Riddells Creek and Macedon Ranges community had been a huge support to her and her family to enable her to support her sister.
“We are really fortunate to live in a place with such strong community spirit,” she said.
“It can get overwhelming but the generosity of people is overwhelming. The community is really what gets us through it.”
The family has been stretched not only with physical distance and emotional distress but also financially. Thomas’ sister Amy launched a GoFundMe campaign in May to tell their story.
Funds raised will help with Thomas’s recovery and assist with travel expenses as the family continues to support Thomas through his toughest challenge yet.
The GoFundMe campaign can be found at: gofundme.com/f/for-our-little-brother-thomas
