In 2011, Audrey was diagnosed with a rare and inoperable brain tumour following a week of headaches that eventually became so strong, she asked her mum to take her to hospital. But a collaborative effort gave her the chance to live a happy, healthy life.
The tumour, which was about the size of a plum, was blocking the normal flow of fluid around the five-year-old’s brain causing pressure to rise inside her skull.
Within 36 hours of diagnosis, Audrey underwent surgery which could only reduce the size of the tumour, not remove it. You see, the mass was embedded around parts of the brain that control vision and core body function. Aggressive attempts to eradicate it would run the serious risk of irreparable damage and loss of life.
Radiotherapy was the only treatment option presented. Audrey’s mum, Sue was urged by specialists to fully understand how this may affect her daughter’s developing brain before they went ahead.
“Not knowing anything about childhood cancer,” said Sue. “We went home and did a web search on best practice forms of treatment for Audrey’s tumour.”
The pros and cons of conventional radiotherapy for a child of Audrey’s age became apparent.
One of the biggest challenges with childhood cancer is that the side effects of treatment that can last a lifetime. Long term effects of the disease and the treatments needed to cure it include organ toxicity, growth and hormonal deficiencies, infertility, cognitive impairment and secondary cancers.
Over 90 per cent of children who survive cancer will develop at least one chronic condition resulting from their treatment. It’s estimated that 30,000 people are currently living with late effects.
“We learned that while radiotherapy was a good option,” said Sue. “It would come with complications, possibly affecting Audrey’s ability to lead a healthy and normal life.”
After discussing this with their neurosurgeon, they learned of another treatment. It was proton beam therapy, but it wasn’t yet available in Australia, and it would cost the family over AUD $220,000.
Proton beam therapy delivers less radiation to normal tissues through sophisticated technology and science. It deposits the greatest amount of radiation right into the tumor and then stops, without radiating beyond the tumour into healthy tissues.
"We learned that this therapy would have a lot less of an impact on Audrey’s health long-term and would significantly reduce the risk of secondary tumours occurring," Sue said. “So we got ready to mortgage the house.”
But help was at hand. Audrey's Australian doctors collaborated with the University of Florida Proton Therapy Institute and formalised an application for support from the Australian Government’s Medical Treatment Overseas Program.
“Within two weeks we had a personal phone call from the head of the Department saying they had reviewed our submission, and they would support us for the medical costs,” said Sue.
The good news is the thirty rounds of proton therapy prescribed controlled the growth of Audrey’s tumour and minimised the harmful long-term effects on her learning along with her ability to live independently.
The not so good news was that after many months of hospital stays with months spent in the United States, Audrey missed out on things her peers were taking for granted.
"This was meant to be the year she started school,” said Sue. “While all the other children were able to learn and make friends in that first 12 months, everything was disjointed for Audrey. She was constantly battling just even to retain the simplest pieces of information."
With persistence and perspective, Audrey continues to catch up. Today she’s a happy and confident ‘tween who loves school and spending time with other children on this journey with whom she finds a strong empathetic connection. Sue reflects back on the challenges faced by Audrey at such an formative age.
"In her life it will be a blessing,” Sue said. “She’s developed skills that children would go through their whole lives and not learn. She’s been able to achieve so much under really challenging circumstances. Her wisdom is well beyond her years. She’s learned to trust in others and find fun where she can. She’s an inspiration to adults, not just children."
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