Emily's Story

Emily's story

I am no longer accepting the things I can't change… I am changing the things I can't accept.

MATT, EMILY'S DAD MATT, EMILY'S DAD

Emily was diagnosed with neuroblastoma when she was just 16 months old. To battle this terrible disease, little Emily has endured two years of treatment including chemotherapy, radiation therapy and surgery.

meet Emily

Meet Emily

Something's not quite right

On Christmas Eve 2009, Matt came home from work and saw that his 16-month old daughter Emily’s eyes were shaking from side to side.

Emily Something's not quite right

The rush to hospital

Matt immediately called an optometrist, who asked for his phone number and said he would call back. A few minutes later the optometrist called and said “I have made an appointment for you, take her straight to the hospital - they are expecting you"

Testing

Over the following days Emily underwent countless scans and tests as her symptoms got progressively worse. By Boxing Day she could no longer walk and had lost all her balance.

I could see the terror in Tina’s eyes. We knew something was terribly wrong.

MATT, EMILY'S DADMATT, EMILY'S DAD

Diagnosis

The doctors found a tumour on Emily's spine. She was diagnosed with a cancer called neuroblastoma.

Emily Diagnosis

Neuroblastoma is one of the most aggressive forms of childhood cancer. About one in two children diagnosed with this terrible disease will survive.

Treatment begins

Emily underwent a five-hour surgery to remove 99% of the tumour. She then embarked on two years of chemotherapy and radiation treatment to ensure the tumour did not grow back.

Emily Treatment begins

At the end of every exhausting day Tina and I collapsed into bed. I would hear Tina crying and struggled to contain my own tears.

MATT, EMILY'S DADMATT, EMILY'S DAD

Hope

Then, finally we had some hope. At 3 years of age, Emily was given an experimental drug that worked wonders, two weeks later the shaking stopped, the dribbling stopped and she started walking again.

We have launched a major clinical trial for the treatment of high-risk neuroblastoma, based entirely on our own research findings.

In remission

Although her speech and coordination have been affected, Emily is doing well. Her regular scans are always a time of huge stress and worry for Matt and Tina but the family is determined to remain positive.

Emily In remission

Children's Cancer Institute is collaborating with children's hospitals nationally and in the US on a clinical trial for relapsed neuroblastoma. This trial is testing a new use for a drug known as DFMO, which has already been clinically tested and approved as safe for use in adults. Our researchers have shown DFMO to be very effective when used in combination with chemotherapy drugs commonly used to treat neuroblastoma.

Although this hideous disease has left its mark, we have beaten cancer and I get to hold my beautiful princess every day.

MATT, EMILY'S DADMATT, EMILY'S DAD

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