New hope for kids like Charlie

1 October 2023 | Expected time to read: 5 minutes

Sydney Children’s Hospitals Foundation (SCHF) first met Charlotte, or Charlie as she is affectionately known, when she was only five years old. Now fifteen, Charlie is like most girls her age – she loves soccer, hanging out with her friends and the colour purple. But there is one thing that sets her apart from her friends - she has also survived brain cancer.

Some of our supporters may recall that when Charlie was just fifteen months old, her parents Rebecca and Rod were given the devastating news their baby girl had developed a large, malignant brain tumour known as ependymoma. The tumour was one third the size of her brain.

Ependymoma is the third most common paediatric brain tumour and forms in the tissues of the brain and spinal cord. Around 60 percent of all children diagnosed are under five years of age, and the cause remains unknown.

Charlie was admitted to Sydney Children’s Hospital, Randwick (SCH) where under the care of Professor David Ziegler, and a team of specialists in the Kids Cancer Centre (KCC) she started her treatment.

Our world turned upside down and our life became one of tests, surgeries, chemotherapy, transfusions and ambulance trips. The Hospital became our second home,” Rebecca said.

Charlie braved 18 months of intensive treatment, including 18 surgeries and many rounds of chemotherapy and radiation. She also suffered multiple infections and seizures and her family were faced with the reality that Charlie may not be responding to treatment. “There was so much uncertainty around Charlie’s treatment and if it was working. She was physically exhausted and there were times when her little body just wasn’t responding.”

“We were also very aware that if the treatment didn’t work, there were no other options and that was terrifying,” Rebecca said.

Despite everything Charlie endured, her body did eventually respond to the treatment and her tumour began to shrink. Over the next decade, Charlie had regular follow up appointments and surveillance and as of today, is cancer-free.

“Throughout her treatment, Charlie never gave up and never let cancer wear her down,” Rebecca said. “We owe a lot of that to the incredible team of doctors, surgeons and nurses at SCH – they were there with us every step of the way, ensuring Charlie received the best possible care.”

It’s thanks to the support of our Movement of Many that SCHF is able to raise vital funds for the frontline of children’s healthcare, helping ensure kids like Charlie continue to receive extraordinary care, now and into the future.

Through the generosity of the public, last financial year SCHF was able to use unspecified donations to fund the position of a Nurse Educator at KCC for 12 months. The training provided by this Educator means families like Charlie’s can take comfort in knowing staff have the specialised skills they need to deliver evidence-based care at the bedside.

And now, SCHF has the honour of collaborating with our long-term unstoppable changemaker Kids with Cancer Foundation on a world-first clinical trial into ependymomas, led by Professor David Ziegler and Dr Marion Mateos at KCC. For kids like Charlie, who spent much of her childhood fighting the disease, this could be a gamechanger.

 

The Deflexifol® At Relapse Trial (DART), proudly supported by Kids with Cancer Foundation, will test the effectiveness of a new chemotherapy for children with high-risk or relapsed ependymomas like Charlie. The trial will use a type of chemotherapy called Deflexifol® that is expected to be less toxic and more effective. Dr Marion Mateos said the trial will provide a new avenue of hope for children diagnosed with this life-threatening cancer.

“At least one in three children relapse after treatment for ependymoma. Sadly, almost all of these children will die from the disease,” Dr Mateos said.

“But if the trial is successful, it will mean we have something to offer kids with high-risk or relapsed disease who previously had no other treatment options available.”

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Rebecca said the trial fills her with enormous hope for the future.

“We are living proof of the amazing work that transpires at the hospital. We know what can be achieved with targeted research, the best clinicians, state-of-the-art equipment and the ongoing and generous support of the community.”

“My hope is that this trial will be the next step in finding better treatments for ependymoma and that it will change the trajectory for these children and their families.”

While Charlotte lives with the long-term effects of treatment, such as mild deafness and cognitive delay, she is a beautifully expressive and energetic teenager who takes her experience in her stride.

“Charlie is a survivor. She doesn’t look back or wallow at some of the misfortunes the cancer has brought her over the years. Instead, she looks forward to all the greatness she is yet to achieve.”

As one of the largest and most trusted kids’ health charities in the country, Sydney Children’s Hospitals Foundation exists to promote charitable investment in the prevention and management of childhood illness like cancer. To help give sick kids the brightest Christmas possible, donate today.

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