Vital support for Tassie cancer kids

THE Kids’ Cancer Project has committed $140,000 in funding to the Royal Hobart Hospital (RHH) to improve oncology services to children and adolescents with cancer across the state.

In 2017, the independent national charity pledged $140,000 for two years in funds that went towards establishing the first statewide Children’s and Adolescent/Young Adult Cancer Clinical Trials Unit.

With that commitment coming to an end on 1 July, the charity has once again stepped in to ensure Tasmania’s most vulnerable children, adolescents and young people continue to receive equal access to cancer care.

The charity has pledged a further $140,000 over three years – funding that provides for an experienced clinical trials coordinator to oversee the program.

The Kids’ Cancer Project chief executive officer Owen Finegan said the charity was committed to 100 per cent survival of all children with cancer, and Tassie kids should not be left behind.

He praised the role of Associate Professor John Heath in advocating for children in Tasmania through his role as the only statewide paediatric and adolescent oncologist in the Apple Isle, and for setting up the Clinical Trials Unit.

“Our aim is to support Associate Professor John Heath as he continues to expand the evidence-based clinical service and trials program in Tasmania to reduce illness-related morbidity and mortality for children with cancer,” he said.

“We want to ensure the Tasmanian Health Service and Royal Hobart Hospital have the opportunity to provide better quality of life for families and reduce the financial burden of those caring for a child with cancer by no longer needing to travel interstate.”

In the two years since the Clinical Trials Unit has been established at RHH, more than 100 children have participated in clinical studies and five have had treatment included as part of that study.

One of those children is Macy Menzie, of Goodwood.

For years, Macy had to be flown from Hobart to Melbourne every few weeks for treatment.

Her condition, neurofibromatosis type 1, resulted in a brain tumour in her optic pathway and traditional treatments were not working.

“She essentially had the equivalent of a stroke,” Professor Heath said.

“She has a left-side weakness in her body and she’s got visual impairment.

“What we’re trying to do is to prevent her from going completely blind, and it’s potentially life threatening beyond that.”

Through the Clinical Trials Unit, Macy has now been able to access a number of revolutionary drugs that have not previously been listed through a compassionate-use program.

“This is possible because we’ve been able to show the drug company that we will monitor her as though she’s on a clinical trial,” Professor Heath said.

“We can do this because we now have the infrastructure, and particularly an experienced clinical trials coordinator, to collect the data and interact with the company with regards to side effects etc.

“So, now a 10-year-old girl is benefiting from being on a drug that would be seen as cutting-edge in Paris, London or New York, but she’s able to do it at home in Hobart.”

Ms Menzie said she was grateful her daughter could now be treated in Hobart after the many flights to and from Melbourne.

She said it had put a huge strain on her family.

“Macy and I would just have to take off, leaving my other daughter, Matilda, in the care of family or friends,” she said.

“Getting on and off planes is exhausting at the best of times, but with a sick child it’s just horrible.

“Not having to travel interstate for Macy’s care is wonderful because it provides stability for both my girls.

“Now that Macy is legally blind, she won’t miss out on so much school, which is so important for her – she’s learning how to dictate using an iPad now.”

Caption: Associate Professor John Heath and The Kids’ Cancer Project chief executive officer Owen Finegan with Lorraine Lea ladies and hospital staff at the funding announcement.

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