Known affectionately as ‘Happy Harry’, it’s hard to imagine little Harry has faced an uphill battle for most of his short life.
Harry was diagnosed with Glioblastoma (GBM) brain cancer at five weeks old and has since undergone 72 weeks of intensive chemotherapy.
This week marked a momentous milestone, with Harry ringing the bell at the Kids Cancer Centre (KCC) at Sydney Children’s Hospital, Randwick (SCH) to officially mark the end of his cancer treatment. His family say this milestone was made possible by the collaborative care their little boy received across hospitals and the specialist treatment provided under the care of Harry’s oncologist, Professor David Ziegler, Senior Staff Specialist in the KCC, along with the support of the wider oncology team throughout his journey.
When Harry was first diagnosed with cancer, the news that he would require 72 weeks of intensive chemotherapy was extremely daunting and overwhelming for parents, Emma and Adam, particularly given their family call Narooma home - a six-hour drive from Sydney.
Initially, Adam and Emma had to spend a lot of time apart to help get Harry to Sydney for treatment every week. It was difficult for them to maintain a ‘normal’ routine for his two older brothers, one who was in kindergarten at the time, and the other a toddler, and the weekly grind soon took a toll.
“Living in regional NSW and having a child who requires ongoing medical treatment typically only available in Sydney added an extra layer of stress and worry on top of an already stressful situation,” Emma said.
Thankfully, Harry’s family were connected with the RuralKidsGPS service, a program funded by NSW Health dedicated to delivering equitable care for children living in rural NSW.
A service based on Sydney Children’s Hospitals Network’s (SCHN) KidsGPS model of care, RuralKidsGPS is currently being scaled to four rural Local Health Districts in NSW: Murrumbidgee, Northern, Southern and Western NSW.
“The program delivers care closer to home for children based in rural NSW with complex health needs. Care coordinators work closely with care teams and families to meet each child’s needs through shared care plans, technology-enabled healthcare, delivering practical holistic support for families and supporting local healthcare providers,” said Dee Collings, Integrated Care Project Manager at SCHN.
Through collaboration between SCHN and Southern NSW LHD, the RuralKidsGPS program enabled Harry to receive some of his life-saving treatment at the family’s local hospital in Bega. This meant reducing the frequency of trips to Sydney from weekly to monthly and turning a 12-hour return car trip with an overnight stay in Sydney into a two-hour return car trip and a day visit to his local hospital.
“Our paediatric care coordinator enables patients like Harry and their families to access services closer to home, leading to less disruptions to family life, reduced costs both in terms of travel and time, and improved quality of life both for the child and their family,” said Danielle Smith, Paediatric Clinical Nurse Consultant, Southern NSW LHD.
Knowing their little boy could receive the care he needed closer to home also brought comfort to Adam and Emma during this challenging time.
“This has been truly life-changing for our family. Being able to spend less time travelling and more time with family has made a huge difference for Harry. He has been so much happier in himself, and able to rest and recover at home with all of us together,” said Emma.
“By having our local team providing care and getting to know Harry, it was comforting to know that if he became unwell at home and needed to be taken to hospital, our local care team were familiar with his needs and could coordinate with his team in Sydney to get him the best treatment and care, whether that be locally or in Sydney.”
Now 23 months old, Harry is described by Adam as an old soul and he says despite everything he has been through, his cheeky personality and infectious smile shine through in any room.
“Harry has accomplished so much and overcome what has been a lifelong battle for him. He is truly an inspiration, and I was flooded with emotions watching him ring the bell,” Adam said.
“There is nothing better than seeing Harry living the life he is meant to and witnessing the bond he has with his brothers. We are all enjoying the quality time together as a family."