Flicking through the pages of ‘My Amazing Life,’ not only does the story of Summer unfold but the strength of her character also shines through.
‘My Amazing Life’ is the biography of 16-year-old Summer, a proud Ngunnawal woman, filled with chapters of her journey, family memories, and messages of her loved ones.
Summer was diagnosed at 13 years old with a rare and aggressive cancer in the brain called Pineoblastoma, with The Children’s Hospital at Westmead (CHW) since becoming like a second home.
Paediatric Palliative Care is one of the multidisciplinary teams that have supported during her treatment and last year, they offered the family an opportunity to be involved in The Story Project.
The Story Project, believed to be the first of its kind for children, provides an opportunity for patients undergoing palliative care and their families at CHW, Sydney Children’s Hospital, Randwick and Bear Cottage, to capture their life story and character through biographical writing.
Sarah Potter, Volunteer Coordinator in Palliative Care, said the service is not an end-of-life exercise but rather aims to tell the child’s story beyond their illness.
“It is about celebrating these children, their lives, and the joy they bring to their loved ones,” Sarah said.
I wish these families had more time, but just being able to pause and reflect on what their child has meant to them is lovely.”
Trained volunteer biographers are matched with a family and over about eight sessions, the biographer conducts interviews with the child and those closest to them to capture their life journey.
Summer was paired with Claire Davis and found sharing her story therapeutic.
“Reliving some of the things [that happened] actually made it make more sense,” Summer said.
Her parents, Naomi and Justin, echoed this sentiment.
“We were able to reflect on her journey, even though most of it is not happier times, it was nice to look back on what she has been through, what she spoke about and to have something in her words. It all just came to life,” Naomi said.
“It brought about a lot of conversations that we would never have touched base on, so it was helpful for us as well. We enjoyed the process and I’m glad we had the opportunity to do it.”
Summer received the book a day before her 16th birthday, with her family, Claire, Sarah, and Tanya Quinn, Aboriginal Health Worker in Palliative Care and Chronic and Complex Needs, in attendance. She was over the moon with how it came together, from the writing to the design.
"I got to choose all the designs for it, so I was happy that it ended up what I had envisioned," she said.
The Story Project was launched as a pilot program in early 2020 and following its success, it was officially introduced late last year.
“We want to capture these children’s stories and hopefully, they can build on that story over time,” Sarah said.
For more information on Paediatric Palliative Care across the Network, visit the SCHN and Bear Cottage websites.