New program helps children with underlying predisposition to cancer

A new program at The Children's Hospital at Westmead is helping to change the game for children with cancer, offering new insight for families with underlying genetic predispositions to cancer and equipping clinicians with more information than ever before.

The Kids with Cancer Foundation Cancer Genetic Risk Program, generously funded by a $1 million donation from the Kids with Cancer Foundation through Sydney Children's Hospitals Foundation, will offer newly diagnosed patients, like 14-month-old Lily, and their families, genetic testing and counselling to determine if they have an underlying predisposition to cancer.

Lily was diagnosed with Retinoblastoma, an early childhood cancer of the eye, late last year. While the diagnosis came as a shock, it wasn’t completely unexpected. Lily’s dad, Scott, was diagnosed with the same cancer when he was Lily’s age.

Scott had radiotherapy and local treatment but unfortunately had to have his eye removed when he was three years old. Thankfully for Lily, it doesn’t look like she will follow this path.

So far Lily has had six rounds of chemotherapy, as well as laser and cryotherapy on the smaller tumours caused by her retinoblastoma, and she is responding well. The cancer has impacted her central vision in her right eye, but she has maintained her peripheral vision, meaning she shouldn’t need to have her eye removed.

Lily is now undergoing genetic testing to confirm if her cancer was caused by the same genetic mutation her dad had.

Dr Luciano Dalla-Pozza, Director of the Cancer Centre for Children at The Children's Hospital at Westmead, said for children like Lily, the new program would help clinicians potentially adapt treatment protocols to minimise the risk of future cancers, implement specific surveillance programs and give families invaluable information to assist with family planning.

“Information about the genetic makeup of a child’s cancer is invaluable in predicting how the cancer is likely to behave and in developing the best possible treatment programs.”

“By examining the child’s underlying genetic risk, we can get a far greater understanding of a child’s future risk of cancer and put measures in place to minimise or eliminate that risk."

"This could be a game changer for some of the families we see.”

The $1 million donation from Kids with Cancer Foundation will support the Kids with Cancer Foundation Cancer Genetic Risk Program for the next three years.

“For 25 years Kids with Cancer has been committed to making today easier for kids with cancer and their families – and we are honoured to be able to fund the continuation of this genetic predisposition service which will provide genetic information to families which could truly be lifesaving," Todd Prees, Kids with Cancer Foundation CEO, said.

The program builds on the success of the PREDICT Study, funded by Luminesce Alliance. Since the study launched in March 2021, genetic testing has been offered to more than 200 children and their parents.

“We are incredibly grateful to the Kids with Cancer Foundation for supporting this important program and helping us continue striving towards changing the outcomes for children and adolescents diagnosed with cancer,” Dr Dalla-Pozza said.

Kristina Keneally, Sydney Children’s Hospitals Foundation CEO, added, “We are so thankful to the Kids with Cancer Foundation for helping us equip healthcare experts with the funding to support them in delivering extraordinary care and creating innovative solutions to some of the most challenging conditions affecting children and young people today.”

While the journey ahead for Lily is still long, she is doing well and her family are comforted by the fact programs like this exist to help give Lily, and children like her, the best future possible.