This story does not have the ending we had hoped for. Our son was just 12 months old when he was diagnosed with stage 4 Neuroblastoma, a form of cancer that is made up of cells that are found in nerve tissues of the body. Neuroblastoma is the most common solid tumour of childhood. It is almost exclusively a childhood cancer occurring most commonly between the ages of 0-5 years. It is considered a rare cancer, with approximately 40 children diagnosed per year in Australia.
Our son endured many months of chemo, surgery to attempt to remove the grapefruit sized tumour on his right adrenal gland, more chemo, a stem cell transplant and finally radiotherapy.
This treatment bought us time with our beautiful boy. The following year Luke's condition deteriorated as more tumours spread throughout his body. We were left with the news that his condition was terminal, our choices limited. We received palliative care at home, our team were amazing. Within weeks, just days before Christmas 1998 our son passed away at home.
It wasn't until our eldest daughter was diagnosed with a rare neuroendocrine tumour - a paraganglioma (over a decade later) in 2012 and was found to have a genetic mutation, that I then became an active health consumer and advocate for not just childhood cancers, but in particular rare cancers and cancer in general. I volunteer my spare time as a consumer representative for the Unicorn Foundation and Cancer Voices SA, as well as my local health network serving on several committees.
I wrote a book 'Through a Mother's Eyes' and decided to donate a percentage of profits to aid the Women's and Children's Hospital Paediatric Palliative Care Unit. We will forever be indebted by the amazing care, empathy and compassion shown by our sons medical team and more recently our daughters.
Each day is a gift, although very different to the life I imagined as a mother, I am grateful for the wonderful people I have met on this journey, and the care shown to my children.
It has not been easy navigating my way through the grief of losing our son. Living a life of meaning and purpose has given me strength, and a new direction - a way to channel my lived experience in a postitive way. Our stories are important to share; the tears, the frustration, the love, the hope and optimism that one day more people will be surviving cancer than losing their lives to it.