Brain Cancer kills more children in Australia than any other disease…. improving outcomes and finding a cure is urgent work.
The Macphillamy family are looking for support to raise funds for Ependymoma research that may lead to new treatments for brain cancer in the future.
Ependymoma is a form of brain tumour with a poor response to conventional therapies. Ependymomas genetic characteristics are complex and not well understood.
The Brain Tumour Group at Children’s Cancer Institute has two objectives:
1) to evaluate the potential of established anticancer drugs for Ependymoma
2) to develop new therapies that specifically target the genetic drivers of Ependymoma.
The results of a pre-clinical trial drug development strategy will have relevance for not only Ependymoma but all Paediatric brain tumours.
Thanks to the kindness of this passionate community, we are delighted to announce that the initial $150k target has been surpassed.
As a result, a new target of $300k has been set which will allow more comprehensive analysis, consisting of genetic testing, drug testing in ependymoma cultures and subsequently in pDX models.
Funds raised will go directly to Children’s Cancer Institute. All donations are tax deductable.
To be told your daughter has a brain tumour is simply shocking. The trauma grows with chemotherapy and further surgeries. You have no choice but to fight.
- Edwina & Andrew, Olivia's Parents
Before Diagnosis
Olivia was 6 months old when her family moved to Papua New Guinea where her father was an executive with an Australian energy company. They were happy times, Olivia laughed and played with her 3 year old Sister Anna and was doted on by her parents and extended Papua New Guinean family.
Symptoms
Olivia’s family returned to Australia for Christmas in 2016 visiting family in Byron Bay. Olivia developed a cough the week before Christmas. Concerned, her parents drove to Brisbane on boxing day to see a paediatrician at the Brisbane children’s hospital. The doctor on call assured the family there was nothing to worry about. Days later Olivia started vomiting, was lethargic and refused to leave her mother’s arms – something wasn’t right. Olivia was rushed back to Brisbane where an MRI was taken as a precaution.
Diagnosis
On New Years Eve the family were given the devastating news that Olivia had a brain tumour and would require emergency surgery. A few days later Olivia underwent a marathon 14 hour surgery to remove the tumour from her brainstem. The risks were considerable however there was no other option to save her life. Olivia’s distraught parents handed over their 18 month old daughter knowing they may not get their little girl back. Despite the odds, surgery was successful.
Treatment
The family relocated back to Sydney. Olivia was unable to have radiation therapy due to her age, there were limited treatment options. The team at Randwick recommended an intensive 18 month chemotherapy protocol based on a UK trial to buy her time. Over a 2 year period Olivia and her parents spent 430 nights in Randwick children’s hospital – mostly unplanned. It was devastating to watch children pass away from childhood cancer who Olivia formed a connection with in hospital. It was a heart wrenching time for the family. After treatment finished, Olivia was blessed with 2 years of good health. In 2021 her family were shattered to discover another tumour. Further surgery and radiotherapy followed.
Today
At 7 years old and despite the odds being stacked against her, Olivia is thriving. She is powered by people, a social little butterfly who delights in the company of family & friends. It’s truly remarkable to look at Olivia when comprehending the journey she has endured. Her laughter is infectious, Olivia lives large, spending her days dancing, perfecting her gymnastics and surfing with friends... Olivia loves life!
Looking ahead
The survival rates for brain cancer are shockingly low. Should Olivia’s cancer return there are limited options available to treat her beyond surgery which carries its own risks. If the trial is successful then it may lead to new treatment options for children with brain cancer.
Children’s Cancer Institute exists solely to put an end to childhood cancer. We don’t just hope to do it, we will do it.
Professor Michelle Haber AM
Executive Director, Children’s Cancer Institute
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