Sunday 20 November is World Children’s Day. To mark the day, we’re sharing the story of Novalie, a young leukaemia patient whose toughness, confronting honesty and leadership in advocating for patients will inspire you.
Novalie is no stranger to the RCH. She’s been in and out of hospital since she was first diagnosed with leukaemia when she was five and spent the next three years undergoing high-dose chemotherapy to treat it.
In September last year, Novalie was on her way out of the hospital, and like all our surviving cancer patients, she got to ring the bell to signify
the end of her treatment. Her family exhaled in relief as the cheers of staff reverberated around the Day Cancer Centre. That same day, however, during a routine check-up with her oncologist, they discovered that she had relapsed. The leukaemia had returned.
Now nine years old and still undergoing treatment, you’d think Novalie would be focused entirely on her recovery. But instead, she has devoted her time and energy to being an advocate for her fellow patients.
With the help of her mum, she filmed a message to our CEO explaining what she thought we could do differently to make hospital life better for those like her who were on the wards for extended periods of time.
She said the physiotherapy was boring and that kids wanted to have fun – so why did the physiotherapists make them do exercises in their hospital room when they really wanted to be working their muscles riding a scooter?
She wanted the hospital to lighten up a bit and let the therapy dogs back – because she missed them. They were soft and furry and patting them made her feel happy, which made treatment that little bit easier.
She created a new version of the patient communication board and explained to our CEO why the information she included would be more helpful to patients and staff than what’s on the existing boards.
So, we listened. Because there’s no one better equipped to be a voice for patients than themselves. Thanks to Novalie’s advocacy, we were able to bring therapy dogs back to some wards and physiotherapists are looking at ways to bring more normal kids’ activities into their sessions. Novalie’s physiotherapist, Claire, creatively tapped into Novalie’s interests and came up with a range of fun and personalised activities. One of Novalie’s favourite ways to exercise recently has been Truth or Dare!
Novalie’s future looks bright and when asked what she wants to do when she’s older, she says, “I’d like to be a music therapist, art therapist, or a hospital CEO”. Watch this space!