The impact of palliative care for Xaviah

The impact of palliative care for Xaviah

Xaviah with his siblings at Bear Cottage

A brain cancer diagnosis hasn’t stopped eight-year-old Xaviah from lighting up every room he enters with his contagious laugh and boundless kindness.  It's this incredible zest for life that defines exactly what palliative care is all about – living life to the fullest.  

Xaviah was diagnosed with brain cancer in early 2022 after he started experiencing dizziness, headaches and vomiting. His family were soon introduced to Sydney Children’s Hospitals Network, where Xaviah immediately began chemotherapy and radiation.  

Over the last two years, Xaviah has spent many days coming in and out of hospital for the various tests, procedures and treatments needed to manage his condition. His family have been introduced to many teams along the way, including the palliative care team. 

Working across The Children’s Hospital at Westmead, Sydney Children’s Hospital, Randwick and Bear Cottage, the palliative care teams are there to help guide children and families through their journey, providing support through respite care, symptom management, end-of-life care and care of families who move into bereavement and beyond. 

For Xaviah, this has included hydrotherapy sessions at the hospital, continued support for his mum and dad, as well as his brothers and sisters, and regular respite visits to Bear Cottage, the state’s only children’s hospice.  

“I felt nervous, scared, and very overwhelmed at the thought of coming to Bear Cottage but after we arrived I realised it is really a home away from home.”    

Xaviah with his family at Bear Cottage

Whether in hospital, at Bear Cottage, or at home, palliative care teams work together to individualise care based on the needs of the patient and their family, recognising that illness doesn’t just affect the child, but all those close to the child including their siblings, parents and grandparents. 

Being one of eight, the focus on maximising memories and quality of life for the whole family has made a real difference.  

“Xaviah loves all the art and craft activities at Bear Cottage, and any opportunity to build Lego while his brothers and sisters have really enjoyed the music, cuddling the therapy dogs and making new friends,” Nicole said. 

“The best thing though is being able to have the whole family stay together. It’s time we really treasure.” 

From providing activities, through to fostering connections with other families, right through to managing Xaviah’s medical needs, Bear Cottage and the support of the palliative care teams has helped to relieve Xaviah’s family of some of the pressures that come from caring for a sick child and allowed them to savour each moment together.  

“One thing that really stood out was the practical support from the social workers and getting assistance with the day-to-day realities of caring for a very sick child, while also giving me to opportunity to have some ‘me’ time,” Nicole said. 

Reflecting on her time at Bear Cottage, Nicole attests to the fact that palliative care isn’t something surrounded in sadness. It is surrounded with warmth, love and courage to help each child and family make the most of every moment.  

Learn more about the Network’s Palliative Care service and Bear Cottage.