Isla's story

Isla's diagnosis had a profound, lasting effect on our whole family.

- Darrin, Isla’s dad


Isla’s mum Sarah had taken her four year old daughter to the doctor because she had been snoring and experiencing pain in her knees for some weeks.

Diagnosis

Sarah and her husband Darrin had put it down to enlarged adenoids and growing pains. Other than her snoring and knee pain, Isla was a happy, healthy child. She was in day care, attending school orientation and had been to swimming lessons the day before the shocking news came.

Darrin recalls that moment two years ago as if it were yesterday. The GP had asked to see him and his wife as soon as possible. She said; "Isla has leukaemia, you have to go to Randwick tonight, they are expecting you."

When we saw our GP, we knew it wasn’t good news and I remember what she said like it was five minutes ago.

- Darrin, Isla’s dad

Hospital

They rushed their desperately ill child to Sydney Children’s Hospital, Randwick that night and Isla’s treatment began the next day. Little Isla had been diagnosed with T-cell Acute Lymphoblastic Leukemia: a particularly aggressive form of leukaemia.

Each year, around 150 Australian children are diagnosed with Acute Lymphoblastic Leukaemia (ALL), the most common childhood cancer. Around 15% will have an aggressive subtype of ALL known as T-ALL which affects T-cells. Children with T-ALL are generally less responsive to therapy and more likely to relapse.

The Zero Childhood Cancer personalised medicine program aims to improve childhood cancer survival rates. The goal is to achieve 100% survival for kids just like Isla.

- Professor Michelle Haber AM

Steroids

The next few weeks, then months, would be a blur of tests and treatments. Isla’s physical appearance changed dramatically from the steroids. Her family’s life was turned upside down. Sarah and Darrin, both police officers, returned to work after about a month working opposite shifts so one could be with Isla 24 hours a day and the other with their other four daughters as much as possible.

The Head of the Institute’s Leukaemia Biology team, Professor Richard Lock, is testing a new compound called OBI-3424. It’s the first of its kind and is one of the most effective drugs he's ever tested on T-cell leukaemia. This new development others hope for children with T-ALL, children like Isla.

I recall the first 9 months as especially scary, intense and traumatic: emotionally and physically for Isla in particular, and the whole family.

- Sarah, Isla’s mum

Maintenance

Fortunately, on 1st of November 2016, Isla finished her treatment. Isla still has a long way to go and her family are realistic. But they are also optimistic about the future and have been enjoying watching Isla live a more normal life.

We live in fear of every bruise, every ache and pain dreading the leukaemia has come back, but we have hope that she is cured.

- Darrin, Isla’s dad

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