Emily was three-and-a-half-years-old when her parents Allison and Liam noticed something wasn’t quite right. Their toddler would often catch herself on the sides of doorways, water would come out of her nose, and her speech was not developing as they expected. Emily was referred to an ear, nose and throat (ENT) specialist, and her parents continued to monitor her closely.

Twelve months later, Emily was still having trouble swallowing. She was experiencing tremors and having difficulty walking in a straight line. This time, Allison and Liam were referred to a neurologist and Emily had her first MRI.

“I remember the phone call coming in, and I looked at my phone, thinking that was odd. I remember the neurologist saying we found something and needed to bring her back and check how fast it was growing. I remember trying very hard not to cry on the phone,” Allison said.

The family returned to Victoria to be closer to family, and Emily’s paediatrician put them in touch with neurosurgeons at The Royal Children’s Hospital (RCH). They connected Emily, Allison and Liam with other specialists across the hospital including oncologists, ENT, respiratory doctors, gastroenterologists and dieticians.

The location of Emily’s tumour is in her brain stem, the most difficult part of the brain to operate on, and most dangerous as it controls almost everything that her body does. She has undergone two craniotomies to try get enough of the tumour to provide more targeted treatment, as chemotherapy was gruelling on her small body.

The craniotomies involved opening a window into her skull by removing a piece of bone, taking a sample of her tumour, then putting the piece of bone back into place. Despite the risks of these procedures, Emily took everything in her stride.

“Usually if you have a problem, you make a plan to fix it but this is brain cancer and it’s likely going to be there for the rest of her life. We just have to try find some semblance of normality for her,” Liam said.

Although she has spent much of her young life at the RCH, Emily does not let her condition interfere with living her best life. The team at the hospital have watched Emily grow from a tiny six-year-old, into the amazing 10-year-old she is now.

“They are some of her biggest supporters and walk alongside us to advocate and assist Emily living the best life she can,” Allison said.

“This experience has left a lasting impact on our whole family. It has not been easy, but it has taught us how to step back and be present in the moment,” Allison said.

“It has brought into our lives some amazing people who we will always be eternally grateful for.

“While I would love to say that we always cope amazingly well with this experience, the reality is some of the days are really tough. 

“Emily’s siblings have had to adapt to the fluidity of their sister’s condition and have become very empathic and compassionate young people themselves.

“Emily has learnt to have a voice for herself and for others.”