Emilia's Story

At the hospital

At the local hospital, Amy and Mat asked for blood tests to be done.

Mat headed home to feed the animals and grab some dinner. The moment he left, a doctor entered the cubicle, looked at Amy ― heavily pregnant and alone ― and asked, "Where's your husband?"

The doctor sat with them and waited for Mat to return before saying anything further. When Mat arrived, they were told Emilia’s results were very concerning, and they believed it might be leukaemia. She needed to go to Monash Children's Hospital immediately.

Diagnosis

At Monash, Matt and Amy were told Emilia needed an urgent blood transfusion. Amy held her daughter through the night as the transfusion ran. At some point in those quiet hours, Emilia reached up to her mum and said, "Mummy, don't cry. We're okay."

Then the doctor who would become Emilia's treating oncologist arrived with his team. He explained that they were almost certain it was leukaemia, and spoke the words Amy would carry for a long time afterwards: "This is not a death sentence."

Treatment begins

Induction therapy began well. Emilia, at two years old, was remarkably compliant. She had an extraordinarily high pain threshold and accepted procedures with quiet cooperation, trusting the people around her completely.

Mat and Amy worked hard to keep her days full. Arts and crafts remained her constant companion, while family and friends delivered gifts and supplies to the ward. Despite the steroids causing fluid retention and mood swings, Emilia managed the first treatment block with surprising resilience.

She had only been home a few days ― during which time Amy went into hospital to give birth to her second daughter, Maeve ― when she developed a serious complication. An abscess had formed became infected, leading to severe sepsis.

She was readmitted to hospital and remained there for nearly a month while the infection was brought under control.

The infection had a significant consequence: Emilia missed two chemotherapy doses, and when her day 29 bone marrow aspirate came back MRD positive ― meaning that leukaemia cells were still present in her body ― her risk classification was changed from standard to high.

She would now need more intensive treatment.

Side effects

During the consolidation phase of therapy, Emilia reacted to PEG-asparaginase, a drug commonly used in leukaemia treatment. Amy was sitting on the bed holding her daughter when she felt Emilia's body become intensely hot, and called out for the infusion to stop.

From that point on, Emilia was switched to a different formulation. Unfortunately, this meant that injections had to be administered into the thigh every second day, which Emilia found very painful.

"She hated it," Amy says. "She has an extraordinary pain threshold for almost everything. But the needle going into the thigh …she would cry. Having to hold her down for that was really, really hard for Mat and me."

Emilia also developed a second infection during consolidation, though this time it was caught early and resolved more quickly. A small but meaningful adjustment ― no more baths, showers only ― helped prevent further episodes.

The steroid component of treatment brought its own challenges. During induction, dexamethasone caused Emilia's mood and behaviour to change significantly. Later, she was moved to prednisone instead - a quieter option for her, and one her parents counted as a genuine relief.

More than two years after going into hospital, Emilia finally completed treatment.

Today

At the time of writing, Emilia is five years old and in Prep. She is exactly who she always was: outgoing, creative, animal-loving, and fond of a good dress-up.

At home, she can sometimes become very angry ― a response Amy understands as the body's way of carrying what the mind couldn't fully process at two years old. Art has become more than a hobby, and Amy and Mat are considering art therapy as something that might help Emilia express what she's been through.

Emilia knows she was very sick. She knows medicine made her better, and made her lose her hair. The rest, for now, is her parents' story to hold

Reflections

Amy speaks about gratitude the way some people speak about a practice ― something she returns to daily. Being confronted with her child's mortality changed how she moves through the world. She doesn't sweat the small things. She notices the sunshine.

Her experience has also impressed upon her the significance of the work done by Children’s Cancer Institute. 

"I'm eternally grateful for everything they (Childrens Cancer Institute) do,” she says. “Eternally grateful for people pushing forward to achieve better outcomes, better treatment plans. Childhood cancer is horrific, so if there's anything we can do to make treatment better, with less side effects, that's a gift in itself.”

"No child should ever be diagnosed with cancer. But I am very aware that because of research and advancements in treatment, Emilia was, and has been, lucky. And not every child has that."