For Maddie having cancer was one thing, enduring the treatments that would make her better was entirely another. 

Like most children, Maddie was afraid of needles and receiving the chemotherapy that would eventually make her hair fall out. But a program at The Royal Children’s Hospital (RCH) offering patients emotional and sensory support made everything much more bearable.

Maddie was diagnosed at 15 months with pre-B-cell acute lymphoblastic leukaemia, the most common childhood cancer. The diagnosis came after Maddie’s mum, Lucy, noticed two thumbprint-sized bruises on her legs. Maddie was referred to the RCH for further tests, which supported the need for several rounds of chemotherapy.

Image: Maddie was diagnosed with pre-B-cell acute lymphoblastic leukaemia

Lucy said, some nights, Maddie vomited until she was exhausted.

“The repetition of the treatment was especially hard,” she said. “Having to watch her have round after round of chemotherapy over the past two years has been incredibly heartbreaking.”

As Maddie’s treatment became increasingly challenging, Lucy was referred to the Oncology Comfort First program.

Based in the RCH’s Children's Cancer Centre (CCC), the program aims to reduce the anxiety and distress of medical procedures while instilling strong coping skills and resilience.

“The Comfort First staff can’t take away the needles, but they change how a child experiences them,” Lucy said.

“On one occasion, Maddie was sent home with a spare plastic oxygen mask, bright stickers, scented lip balm and instructions on how to wear a mask before her next procedure. The lip balm masked the smell of the gas and the mask helped her prepare while providing a sense of control."

“These small comforts stop our children having trauma that lasts a lifetime. We were incredibly lucky that Maddie has had same clinicians from the start. They can tell when things are getting hard, even before I have the words for it.”

Now three, Maddie’s treatment is expected to finish in October, when she will officially ring the RCH’s celebration bell.

Murdoch Children’s Research Institute (MCRI) Associate Professor Maria McCarthy said the success of programs like Comfort First had inspired additional research.

With funding, her team will establish the Children’s Comfort Promise, the first hospital-wide strategy to prevent and treat needle pain for children.

Image: Maddie with mum Lucy and Comfort First clinician Jess

The project led by MCRI in collaboration with the RCH and the University of Melbourne aims to map current needle pain practices to develop a scalable and sustainable model that improves clinical care.

“Needle pain is the most common painful experience for hospitalised children,” Associate Professor McCarthy said. “Up to 75 per cent experience significant pain from needles and babies in intensive care undergo up to 10 painful procedures daily. Despite proven strategies to reduce harms, these are often inconsistently applied, which can lead to children being distressed and fearful.

“Poorly managed needle pain can lead to long-term fear of needles and healthcare avoidance, which is a leading cause of immunisation non-compliance. Fear of needles affects 25 per cent of adults and is mainly related to negative childhood experiences.”

Associate Professor McCarthy said providing patients and families with tools to cope with painful or invasive procedures was an essential aspect of paediatric care.

“We’re keen to improve pain assessment, prevention and management to ensure excellence in overall care and reduce long term trauma,” she said.

Read more about the Children’s Comfort Promise.

Maddie with her sister Eleanor, mum Lucy and dad Josh