Doing the cancer walk with your child is not all roses… it’s hard to stay positive and look at the upside.Craig, Violet's dad
In November 2015, at just six years old, the life that Violet knew suddenly changed. She now faced a world of hospitals, needles, and seemingly endless doses of medication that made her feel sick.
Violet had been complaining of tummy upsets and aches and pains for several months, but everyone thought it was just growing pains. In November 2015, an ultrasound picked up the real cause – a tumour the size of a fist near her left kidney. Her official diagnosis was Stage 4 neuroblastoma.
The cancer was all through her body. It was in her skull, her jaw, her spine, her legs and her bone marrow was also affected. No wonder she felt sick.
Colleen and Craig weren’t prepared for how quickly Violet would deteriorate. Their sunny, sweet girl was being ‘eaten up’ by this terrible illness. Two weeks after being admitted to Lady Cilento Hospital, Brisbane, the pain in her legs was so bad she couldn’t walk. Violet’s treatment began immediately with seven rounds of chemotherapy, as well as a nine hour surgery to remove most of the tumour and her left kidney. The next few months the family were by Violet’s side as she underwent radiation therapy and immunotherapy.
Living with cancer
It was a grueling new way of life. Craig and Colleen juggled school drop-offs with bedside vigils and complicated medical procedures. They were awake in an instant in the middle of the night to help Violet as she endured the side-effects of her treatment.
It’s like having a newborn baby again – the nappy changes, the sleeplessness, the bad dreams.
The new normal
Family dinners at home became a thing of the past. Violet’s appetite was completely destroyed by the cancer and the medication, so she had to be tube fed. The constant demands of Violet’s medical regime, the emotional strain and the day-to day cares of life took their toll on everyone. Craig took extended leave from work, while Colleen put her studies on hold.
Life is very different, it’s all about survival. We will do anything we need to, to help our precious daughter get better.
It’s been nearly 2 years since Violet was diagnosed. During which time she should have been practicing handstands in the playground and playing with her friends. Instead, she’s endured more suffering than most of us will ever experience in our lifetimes. She has finished treatment now, but if she relapses there is little hope. However, our research into new treatments could change that.
Neuroblastoma claims more lives of children under the age of 5 than any other cancer. The survival rate for high-risk neuroblastoma is about 50% and the rate for the most aggressive form can be as low as 15%. Many aspects of neuroblastoma biology, diagnosis and potential treatments are researched in our labs. One example of those is the drug DFMO. Which our research found helps chemotherapy drugs more effectively kill neuroblastoma cells. DFMO is undergoing an international Phase I clinical trial for children with relapsed neuroblastoma led by Sydney Children’s Hospital, Randwick.
The research Children’s Cancer Institute is doing will make a real difference. One day, they will bring us a cure. We need to get behind them and support them.
Children with cancer have an all-consuming passion for life and Violet is no exception. Violet has recently taken up roller-skating and is determined to not let cancer stop her having fun. Craig and Colleen have worked hard to lighten the load on their family. They’ll go to extraordinary lengths to make Violet’s day brighter.
Images by Etta Photography