Lulu's Story

"There is nothing more important than saving a child's life."

Lulu was a bright, bubbly, joyous child with no health issues or concerns - but when she was eight months old, her family knew something was wrong.

Persistent fever

Lulu had a fever that wouldn't go away. At first, her parents thought it was teething issues, so they took her to the hospital for further tests - but never made it home after that.

Symptoms

It was initially thought that Lulu was suffering from constipation, then blood tests also revealed that Lulu's iron levels were terribly low. 

A second opinion

Many doctors and tests later, Lulu's fever was still refusing to dissipate. The family was sent to Sydney Children's Hospital, Randwick - where they found a tumour in her abdomen and extensive cancer in her bones and bone marrow.

Being told your child has cancer is every parent's worst nightmare - you can't ever be fully prepared to hear those words.

- Josi, Lulu’s mum

Diagnosis

The tumour in Lulu's abdomen was the size of a grapefruit. She was diagnosed with stage 4 neuroblastoma and started immediately on chemotherapy - but did not respond to her first six rounds.

Neuroblastoma is one of the most aggressive forms of childhood cancer with a survival rate of about 50% - making it a high research priority for our scientists. Neuroblastoma is a cancer of the nervous tissue, which forms solid tumours.

Lulu's courage and resilience during her treatment makes her my absolute hero and inspiration.

- Josi, Lulu’s mum

Treatment

Lulu's lack of response meant her case was upgraded to high-risk. Today, aged just eight, she has undergone a dozen rounds of chemo, several surgeries, a transplant, radiation and an immunotherapy trial.

We desperately need more effective, less toxic treatments to improve the abysmal survival rates of neuroblastoma and give kids like Lulu a brighter future.

- Josi, Lulu’s mum

Defying statistics

Lulu's case continues to defy statistics and she is still not cancer-free. Her family is now playing an anxious waiting game; hoping for breakthroughs in scientific research that lead to new and innovative drug discoveries.

We have progressed our research into aggressive neuroblastoma to find potential new treatments like CBL137. Latest findings suggest that by combing CBL137 with a drug called Panobinostat, we could potentially transform the treatment of high-risk neuroblastoma, so that more children survive.

In my 34 years as a researcher at the Institute, this is one of the most exciting discoveries I have seen. It could be life-changing.

- Professor Michelle Haber AM 

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