Your journey started five and a half years ago. When Victoria was first diagnosed, were you aware of programs like Camp Quality?
Yes, we were aware of Camp Quality, mainly due to their TV advertising. However, we were not aware of the extent of their programs.
What was the experience like finding out that your daughter, at the age of three, was diagnosed with cancer?
It was devastating. Our lovely, although hectic life, with our own business and four children was turned upside down. We lived in crisis mode for six months after the diagnosis, and twelve months later, when the tumour started growing again, we had a further 15 months of living in crisis mode while Victoria was having weekly chemotherapy treatment.
A few months after Victoria’s diagnosis – I thought we were all travelling along well. I would look at the Camp Quality poster in the paediatric oncology waiting room and think, we’re ok, we don’t need them. But I was so wrong. At first for me Camp Quality was all about the children, ensuring they were having a good time, a break from the stress at home of living with a child with cancer.
Over the 5 and a half years we have been on this journey I have realised that I too, as the mum, the mum who had heard those horrendous words, ‘there is a mass in your child’s brain’, could have fun at these camps.
That might sound bizarre, but as a mum you are often carrying the emotional responsibility for the family – no matter where you are – home, hospital and holidays. So as this realisation sunk in, I started getting brave – at one of the camps – trying surfing – much to the hilarity of the children. And then being the first to go on the giant swing, where you are hoisted up 18m and then, harnessed in, left to free fall. I started to realise that I could have fun again too.
How do you explain the process of treatment to a three year old? How did you help Victoria understand her diagnosis?
When Victoria was three and had to have brain surgery our explanation to her was something like, ‘there is something in your head that shouldn’t be there. It is causing you to fall over and making your left hand very weak. The doctors are going to put you to sleep and try to take it out.’ We gave this same explanation to our other three children.
From the first follow-up MRI three months later (and subsequently every three or four months for the last 5.5 years) Victoria has attended all the oncologist review appointments, listening to what he says, viewing her brain scans and asking her own questions. She is always amazed by her eyeballs in the scan. Actually, now when we go to appointments most of the conversation is between her (almost 9 years old) and the oncologist.
The play therapist, funded by Camp Quality, has also played a huge role in explaining the process of receiving chemotherapy via a portacath, helping to remove the fear and anxiety around that process.
How has Victoria reacted to the support from Camp Quality and programs like this?
Our children always return home from a Camp Quality program with greater confidence in who they are and what they have overcome. The invaluable relationships they have with all the staff and volunteers is a support network for us all. Victoria is excited to host and cook for her friends at her very own Dine at Mine this year to give back to Camp Quality for bringing laughter back into her family.
We describe the journey as a truck accident that never ends. Camp Quality can’t take away the pain, it cannot heal your child, but it gives you the opportunity to be a family for one weekend while you go through the most horrendous experience.
How is Victoria doing now? How are you both doing now?
Victoria is thriving. Her last MRI in May 2016 showed that the tumour is getting smaller with no medical intervention. The chemotherapy was stopped in October 2013, almost three years ago. From our perspective this is an answer to prayer.
Victoria is getting ready to compete in the NSW Combined Independent Schools State Athletic Competition in Olympic Park, Sydney in mid-September. We are currently working on getting better pain management strategies to improve her everyday quality of life.
Due to the great result in the May scan, for the first time in 5.5 years the oncologist has extended the gap between MRI’s to six months. As a family this longer gap has meant that we can have a longer break without the pre-scan anxiety setting in. We feel so blessed.