When two-year-old Emily woke up from a nap with a mild shake, her parents, Sarah and Jay, never imagined it would be the first sign of a heartbreaking diagnosis — brain cancer.
“We didn’t really think much of it at the time, because it would usually resolve itself in about 30 seconds,” her mother, Sarah shared.
But these tremors became unforgiving. They were relentless and quickly taking over her tiny body. Sadly, this was just the start of what would be a rapid escalation of devastating symptoms for Emily.
“She struggled bringing food to her mouth, was getting more fatigued and also vomited a couple of times,” remembered Sarah.
As Emily’s condition continued to worsen, her parents began a desperate search for answers. They took her to two general practitioners – the first dismissed it as a common cold, and the second suggested a harmless sleep issue.
But as her parents, Sarah and Jay, watched their daughter grow weaker, their fears only deepened. They knew that whatever was happening to Emily, was neither common nor harmless.
Seven long days later, Sarah and Jay made another desperate attempt to get help – rushing to the RCH before it was too late.
But as soon as they arrived, not yet even out of the car, Emily vomited all over Sarah.
“You have to help us. This is not right, she’s not well,” Sarah begged the nurse.
Without any hesitation, the Emergency Department paged a neurologist who told the parents that Emily needed to undergo a magnetic resonance imaging (MRI) scan the very next day.
For the first time, Sarah and Jay felt like they were being taken seriously.
The results from her scan were much worse than anyone could have imagined. Emily was found to have an avocado sized tumour in her brain – crushing over half of her brain and putting her life at risk.
Emily urgently needed surgery – and it couldn’t wait.
Emily after surgery at the RCH
“By the time she went into surgery, she was barely responsive. Our baby was dying before our eyes,” said her father, Jay.
The operation lasted a whole 12 hours, but for Sarah and Jay, this felt like an entire lifetime.
Thankfully, the operation was a success. The surgeons were able to remove most of the tumour, without any of the distressing and life-long side effects.
But Emily’s journey was far from over. She needed a second surgery. While the surgeons were able to remove most of the tumour, there were still parts remaining. So, Emily had to undergo surgery for a second time before the family were finally met with the news that Emily was tumour free.
“For certain types of brain tumours, surgery might be the only treatment that they require. For other types of brain tumours like Emily’s, they do require other therapy – like chemotherapy or radiation therapy – to ensure that no cancer cells will grow back and that the tumour is gone for good,” explained Dr Lorna McLeman, Emily’s oncologist at the RCH.
But radiation can be harmful for a child as young as Emily, leading to long-term and devastating side effects.
“Standard radiation tends to attack and kill cancer cells. But it can also harm cells that are in the surrounding tissues to where the tumour is,” she emphasised.
Jay and Sarah were told Emily might need to go to America for a type of radiation called Proton Beam Therapy (PBT). Unlike traditional radiation, PBT is highly targeted, sparing more of the healthy cells – making it the best option for someone as young as Emily.
But the treatment came with huge challenges. It meant relocating to America for two months, so Emily could attend sessions five days a week. Emily would also need to be placed under a general anaesthetic, so she was completely still when receiving the radiation treatment.
The cost, the distance and the disruption to their family was enormous. But Sarah and Jay were ready and willing to do whatever it took to give their little girl a fighting chance and a brighter future.
Emily at the RCH
Devastatingly, when further analysis of the tumour came back, Emily was found to have an extremely rare form of cancer – so rare, in fact, that only 20 cases had ever been documented worldwide, and Emily was the first case the RCH had ever seen of this particular tumour.
With such a small pool of cases, it wasn’t clear what the best treatment plan should be. Emily’s parents had hoped that the surgery had removed every cancer cell, and that it would never return. But, as they faced the terrifying unknown, Sarah and Jay made the difficult decision to wait before going to America.
Sadly, only a few months later, Emily’s tumour did return – in the same location albeit smaller – meaning another round of surgery. Fortunately, the RCH team were able to again successfully remove all of the tumour.
But this meant Emily now needed radiation – urgently.
“Once a tumour grows back, it’s going to keep growing back, unless some kind of intervention is made. So, we started packing our bags,” Jay said.
Fortunately, Emily was able to access PBT. This targeted radiation was able to minimise most side effects – and best of all, her response to the treatment was overwhelmingly positive.
This transformative treatment brought the family a true sense of normalcy. And for the first time in months, they were able to see Emily truly enjoy her childhood, just like any other little girl.
Emily’s third birthday party
After the successful treatment, Christmas this year will be unlike any other for Emily and her family, as they finally get to celebrate the season together, in good health.
“Christmas is just so much more magical when kids can be involved. I’m so grateful that we’ll have this chance to experience this Christmas together,” Jay said.
Emily’s family at Christmas
They also feel incredibly thankful to the RCH and donors for helping provide sick children like Emily with life-changing care.
“If you’re considering donating this Christmas, please remember that it is the best gift you can give, because you’re not just giving money. You’re giving hope and opportunities. You’re making sure that kids in Australia can get world class and lifesaving treatments. It’s the best Christmas gift you can give,” said Sarah.