My precious daughter, Violet, was diagnosed with aggressive stage 4 neuroblastoma when she was just six years old. I am over the moon to let you know that Violet completed treatment in January this year and her disease is stable. Her hair is growing back (much to her excitement) and her fatigue levels have dropped enough to allow her to be settled back into school (on most days).
As a parent of a child with cancer, ‘scanxiety’ kicks in every six weeks when Violet is back at hospital for tests to look for any signs of relapse.
I plan to now use my insight into childhood cancer by serving on the Institute’s consumer engagement panel, reviewing and providing meaningful feedback on their grant applications to ensure research is relevant to the needs of families facing cancer.
Craig reads Violet a story in hospital
Consumer engagement is vital to the success of the research undertaken at the Institute, making sure discoveries are progressed into actual treatments for kids with cancer, like my daughter Violet, as quickly as possible.
"I am a big supporter of Children’s Cancer Institute and the dedication they have to research into eliminating childhood cancer."
The Institute is not just raising awareness of childhood cancer, they’re undertaking the research required to put an end to it – not just in a petri dish, but translational, actionable research.
Researcher looking at cancer cells in the lab
Further reading and how parents can get involved
This post first appeared in the Spring 2017 issue of LabNotes (pdf, 1.4MB). You can read Violet’s story on our website.
We’re looking for more people to participate on our consumer engagement panel, making sure our research is relevant to families’ needs. If you have an experience of childhood cancer and you’d like to get involved, like Craig, or the Mazzucco family who help the research of Dr Orazio Vittorio, just email Josi Demetriou.
