From a parent’s childhood cancer heartache comes the continuation of a clinical care program in hospitals until 2024. More Beaded Journey packs are on their way to The Royal Children’s Hospital and Monash Children’s Hospital cancer centres thanks to funds raised by the Lillies for Hope Special Named Fund.
The Fish family – Sarah, Liam, Zoe and Roland – experienced the despair of losing daughter and sibling Lilly at the tender age of six to a Wilms Tumour (kidney cancer) in 2014, following a two-and-a-half-year plight to save her. Lilly’s determination, optimism and hope inspired the family to find a way to honour her life, and support other families going through childhood cancer.
They created a Special Named Fund with the Foundation, Lillies for Hope. Generous supporters have donated $27,120, making it possible to fund The Beaded Journey program until 2024.
“We are incredibly honoured to be funding The Beaded Journey. It is a program that is very close to our heart, as we experienced the joy that it brought to Lilly while she underwent treatment. We know how important this program is, not only for children in hospitals but for lifting the spirits of their families too”, Sarah, Lilly’s Mum said.
The Beaded Journey allows children to chronicle each milestone and significant procedure throughout their cancer treatment with a different coloured and themed bead.
Special occasion beads also mark birthdays (balloons), special events (rainbow), even travel – and the one bead every child and their family looks forward to receiving, the end of treatment (sunshine).
Families can also use the program’s accompanying Beaded Journey A5 journal to track and record when the beads are achieved and capture thoughts, emotions or memories along the way.
Beads can help children on the ward connect; exploring beads together and sharing their unique treatment and life experiences.
“Lilly loved her rainbow, birthday and milestone beads. She was always excited to see what beads she would receive to represent different special occasions and she read her journal with curiosity, asking about the significance of each bead. Looking back, it was those milestone beads that held hope and importance for all of us as a family.
“The Beaded Journey stands as a tangible reminder of everything Lilly went through. It symbolises her bravery and tells a story of all that she endured. Her beads have become a cherished touchpoint to remember each moment we spent together. We are so happy that this program was part of Lilly’s cancer therapy and can continue for patients today and in the future”, Sarah said.
It is a real pleasure to assist in implementing The Beaded Journey program at Monash Children’s Hospital (MCH). It is a very popular program within the Children’s Cancer Centre to recognise the journey for children and adolescents receiving treatment. A truly beautiful program and we are very grateful to Lillies for Hope and the Children’s Cancer Foundation for providing the funding to allow this program to run within our service.”
Comfort First clinicians introduce patients to The Beaded Journey while they are in hospital by offering them a cord with beads that spell out their first name or nickname, as well as a bead representing their diagnosis. They continue collecting beads for each procedure or event.
A Beaded Journey is for all children receiving treatment at the Children’s Cancer Centre who choose to participate.
In receiving The Beaded Journey with Lilly, her Dad Liam remembered, “we were offered the program during Day Oncology at the beginning of Lilly’s treatment in 2012. We recall the children sitting together, waiting to collect their beads with such excitement and anticipation.
We felt it would be something positive and relatable for Lilly, bring some joy and help prepare her for upcoming treatments; they gave Lilly comfort and helped relieve her anxiety about upcoming hospital visits. The beads became a beautiful decoration we kept on Lilly’s IV pole during each admission”.
Each participant of this program forms a personal attachment to their journey beads. For some, it is an acknowledgment of how far they have come in their treatment journey and how much adversity they have overcome. For others, it encourages positive interactions within the hospital environment or reinforces a job well done. The Beaded Journey program in an invaluable tool which allows clinicians to acknowledge a patient’s experience, assess how they are coping, provide feedback and encouragement, clarify misconceptions and provide education for upcoming procedures.
Thank you to the Fish family for sharing their story and their continued support of the Foundation.
Photo credits: Sarah, mum of Lilly.
Copyright 2024 Children's Cancer Foundation
ABN: 96 114 942 415
