'It was 2am in the emergency department when my 5yo son asked if he was going to die.'

What we thought was going to be an average Thursday two years ago, turned out to be the worst day of our lives.

In April 2016, our local GP referred my cheeky five-year-old son Hayden to the Children’s Hospital at Westmead. He was feeling unwell with persistent fevers, bruising and lethargy. The GP suspected a problem with his appendix, but what we didn’t know was this day was going to change our lives forever.

After a blood test in the Emergency Department, the doctor ushered Hayden and I into an isolation room and said barely above a whisper that they believed Hayden had leukaemia.

This was going to be confirmed the following day when the doctors were able to obtain a sample of his bone marrow under a general anaesthetic. As the doctor arrived following the operation, we followed her down the very long ward corridor knowing our worst fears were about to be realised.

Our beautiful son was diagnosed with Acute Lymphoblastic Leukaemia. My husband and I sat holding our breaths, listening to the doctor describe the cancer. Not even in our worst nightmare could we have imagined the extent of what our little boy was about to endure, in order to fight for his life.

"Not even in our worst nightmare could we have imagined the extent of what our little boy was about to endure, in order to fight for his life." Image: Supplied.

After months of treatment, we were told it wasn’t working as expected and he was upgraded to a High-Risk Protocol. Our already challenging world became even more so. In the darkest days I would lay in Hayden’s bed comforting him whilst the nurses stood behind, comforting me. One of the hardest moments, was during Hayden’s most intensive treatment when we were rushed to the emergency department at 2am on a very cold winter night, and he turned to me and asked if he was going to die.

If that wasn’t enough, our family was also torn apart. I spent most of my time with Hayden in hospital whilst Hayden’s sisters Maisy, eight, and Grace who was just a toddler, were cared for by my husband and their grandparents. The impact on them was enormous, we watched our little girls go from being happy and confident to nervous and anxious overnight. As Camp Quality (Australian children’s cancer charity) would say, our girls lost their Kid-ness. Wondering what Kid-ness is? Well it’s a new word that Camp Quality created which represents the the essence of being a kid - it’s the sheer joy for being in the moment - which is something kids and their families lose during a cancer experience like ours.


This is why we were so grateful to have the support of Camp Quality. We attended Camp Quality events and programs including Family Fun days, Christmas parties and a Family Camp. Hayden’s older sister attended a Camp Quality Middle Camp, providing her the opportunity to have an escape from her uncertain world in a safe and supportive environment. For the first time in a long time, the focus was on her and not just her sick brother.

leukaemia child family story Camp Quality
Having a child with cancer affects the whole family. Image: Supplied.

This changed our lives. Not only because we spent quality time together as a family but meet other families who were going through a similar experience. You have your friends, and everybody tries to understand, but I just don’t think you really understand unless you are a mother of parents of a child going through the same thing.

This year, we’ve teamed up with Camp Quality to support these beautiful Kid-ness Advent Calendars which we love having in our home for the countdown to Christmas.

The cards in each day of the Kid-ness Advent Calendar bring Kid-ness back to families, by connecting them with fun moments – just like Camp Quality did for us. They are absolutely beautiful on the inside and out, so we’ve loved decorating our home with the calendars this Christmas!

You can buy a Camp Quality Kid-ness Advent Calendar to support sick kids here.

What are your family Christmas traditions? Tell us in a comment below.