Our Story

In 2016 the youngest member of our family of 5, started feeling unwell. William was just 6 years old, and his symptoms were not severe. He had an upset belly and felt lethargic. With these symptoms, William could have easily been diagnosed with a stomach virus and sent home. 

We made an appointment with our family doctor who agreed to run some tests. 2 days later she explained the results. William has a swollen abdomen, and spots on his liver. Further investigation was needed. She asked me to take William home, pack a bag for both of us and go to Emergency at Westmead Children’s Hospital, they were expecting us.

After speaking to a doctor in emergency we met an oncologist who believed that William had a type of lymphoma and explained William would need some more tests. 

After a week of tests, a diagnosis was still not available. We now knew that William had several tumours in his body, the largest on his liver. He also had fluid in his chest cavity which was now affecting his breathing. Several cancers had been ruled out, but nothing had been confirmed. The decision was made to start Chemotherapy to help stop the cancer growing whilst we waited for the next tests and their results.

13 days after being admitted to hospital the Doctors were finally able to diagnose William’s cancer. William has Neuroblastoma’ a rare childhood cancer that starts in the early nerve cells of the sympathetic nervous system.  

‘Neuroblastoma’

‘Stage 4, High Risk, Aggressive’.

‘12-18 months of treatment’.

‘6 rounds of chemotherapy’.

‘Surgeries’.

‘2 x Bone Marrow Transplants’.

‘Radiation’.

‘5 rounds of immunotherapy’.

‘40-50% chance of survival’.

We had no idea William was as ill as his diagnosis confirmed. It was a lot for all of us to comprehend. 

William’s cheeky personality, love for life and his smile hid his troubles well and this became his strongest coping mechanism.

After 17 months of treatment, William had finished his protocol, but his next scan showed another tumour. More radiation was planned to target this tumour. 

A few months later another scan showed another tumour and once again William headed back for more radiation. 

It is heartbreaking to watch your child go through treatment. The treatment itself leaves them so sick and it is hard to explain it is also the very thing that will help make them better. 

With extended family by our side, we made the conscious decision to ensure William had great experiences during this horrible time. Most of the time William was nothing less than brave and determined to get through his treatment. There were times that he was emotionally and physically exhausted, but it was often William that made us look at life with clearer eyes and a jovial outlook. 

However, there was a period of time when William became withdrawn and his emotional and mental health crumbled. After his Bone Marrow Transplants, he was in isolation from the general public for 9 months, so it made it difficult to distract him with adventures and having fun.

We managed the best we could, and with help, William’s love for life returned. His cheekiness and flamboyant personality came back more and more each day. Bigger than anything we had seen with him before. His love for family and friends extended widely and he drew people into the gravitational pull of his infectious personality.  

In February 2018, William had another scan. We knew the results were not going to be favourable. Over the past few months his energy levels had dropped, his hunger had declined and one of his eyes had changed indicating there was a tumour on a nerve. 

When we received the results there was only one thing we were not expecting. 

William has 6-8 weeks left of life, there is nothing that we can do as the cancer is so aggressive and widespread. 

Heartbroken and lost we somehow made the decision that those 6-8 weeks would be made full of fun and memories, not only for William, but for all that loved him. This way we could keep him and his legacy alive in the hearts of everyone that he knew.  We started to fulfill his wishes and at times some surprises. 

We had incredible help from family, friends, friends of family, friends of friends, total strangers, and people you could only imagine. We were busy nearly every day and William was able to experience things that some of us can only dream of.

8 weeks after his last scan, William peacefully left us in his sleep surrounded constantly by family and friends with nothing but love for him. 

We will always be grateful for everyone that helped us no matter how big or small during his treatment and end of life. We could not have done it without them. 

This is why we chose to help other families who have children fighting cancer. The Gold Ribbon Ball is an event that raises money for the Kids with Cancer Foundation Australia  A foundation that helped us at our most needed time. Please take a moment to look at their website and see the wonderful work they do.