January 2, 2022, my husband Brad and I decided to take the kids to the beach to celebrate the new year with friends. Hayley (8 months old) was very unsettled, so we left early and went home. Over the month prior, we had noticed Hayley wasn’t hitting milestones like sitting up unassisted etc, but thought she was just being a bit lazy since our son was also very late with everything.

A week before the beach trip, Hayley broke out in a rash on her back, and I also thought I saw her foot spasm at the same time. We now know both these symptoms are signs of neuroblastoma.

The next day, Hayley had several leg spasms. We also noticed she now had full paralysis in her legs. I took Hayley into Bunbury Emergency Department on January 3 while Brad stayed home with our son, Liam. 

After assessment, the doctors/paediatrics team were convinced she was fine. They said she was otherwise very healthy and to come back the following day for an X-Ray to work out why her legs weren’t moving. I was surprised they were happy to let us go.

We thank our lucky stars that before we left, a neurologist from Perth Children's Hospital (PCH) was in Bunbury that day, and asked to assess Hayley as her case was unusual.He took one look over her and said the most probable cause was Cerebral Palsy. Hannah, Hayley's Mum

When he told me this I cried and cried. He advised me to immediately take Hayley to PCH, and the Emergency Department there would fast track us for scans and further assessment. So off we drove 40 minutes home to pack a bag and then two hours to Perth. I was an emotional mess. 

Upon arrival to PCH, Hayley was seen by many doctors and specialists. The next day she was under the care of the neurology team and we were admitted. My husband had now joined us as well. It was when an oncologist came to assess Hayley that my heart sunk even more. Knowing what an oncologist does, confusion set in when we were already told it was probably cerebral palsy. 

Hayley was taken for an MRI under general anaesthetic to check her spine and chest. After we got Hayley back to the ward, the neurologist came to see us with another four or five doctors. He told us both to sit down and explained that they found a large mass sitting at the back of Hayley’s chest close to her heart. The mass needed a biopsy to tell us what type exactly, but it was a form of cancer.

The tumour had made its way into her spinal cavity causing compression which resulted in leg paralysis. He made us aware that within an hour Hayley would go back under general anaesthetic for emergency spinal surgery to remove the part compressing her spine. He also told us she may not walk because of the damage caused. Many emotions were felt, and tears shed. How do you even begin to process such information about your innocent baby girl? Hannah, Hayley's Mum

The tumour debulking from Hayley’s spine was a success. She was very sore when she woke up. Thankfully she didn’t need to go to ICU this time.

Hayley’s biopsy results came back after a two week wait. It was then confirmed the cancer was called neuroblastoma, and thankfully wasn’t the fast-growing type. During this time Hayley made great recovery and was doing well. After 4 weeks she started to move her feet and the movement in her legs just kept getting better and better with some physio and time. 

Hayley also needed chemotherapy. Since we needed to be close to the hospital for a long period of time, we decided to move to Perth. Luckily we secured a townhouse close nearby the hospital.

When Hayley started chemo it was very tough. Chemo for a child is one thing,  but doing it whilst in the middle of a pandemic with major restrictions was something else. Only one parent was allowed in at all times, and because of this it got very lonely and isolating. We also had the constant worry of contracting Covid and passing it on to Hayley who had a weak immune system, as well as all the other worries childhood cancer brings.  

Hayley’s body didn’t react to chemo very well, she was very sick and didn’t eat much for months. It was horrible watching her go through so much trauma, I still have nightmares about it. Hannah, Hayley's Mum

After Hayley finished her two cycles of treatment, another MRI was needed to see if the chemo was shrinking her tumour. We waited two days to get the results, and when we did our lives turned upside down again. Hayley was chemo resistant.

Over the four weeks of treatment, her tumour doubled in size. Her little body rejected the chemo, and it did absolutely nothing. All those tears and pain for nothing. Our oncologist said that there wasn’t many more chemo drugs they could give Hayley, so the only other option was a second surgery to try and remove as much tumour as they could. The surgery was through the side of Hayley’s chest. We waited eight hours until we could see her.

Walking into ICU, I didn’t recognise our baby girl. She was so swollen from surgery and the harsh pain killers made her unrecognisable. In that moment I just wanted to trade places with her so badly, much like throughout this whole process. Although the recovery was hard with pain management and drug withdrawals, the surgery was a success. 90% of her tumour was removed. The last little part of tumour still stays wrapped around Hayley’s aorta and is monitored every three months under MRI.

Not only is it a physical challenge for cancer patients, it is also a mental one. Hayley suffered from PTSD for a long while after we returned home. For months she would wake every hour in the night screaming like someone was hurting her. We can only assume she was having flashbacks to the hospital stays. Thankfully, with some help, she has now gotten through that. Hannah, Hayley's Mum

It has been almost a year since Hayley’s second surgery, she can walk, and her tumour hasn’t grown at all. Sometimes neuroblastoma cancer cells can mature and sit benign in the body forever, which is what we hope continues for our girl. Hayley is almost two, and when she is five years old she will be in full remission with this whole process finally in the past forever. 

Kids are so resilient; Hayley and many other children have shown us so much strength going through the horrific things they need to get better. Nicer treatments and more research is most certainly needed, and we can’t thank Neuroblastoma Australia and Perth Children's Hospital for everything they do.

Help children like Hayley 

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma. We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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