Elsie's Story

Little Elsie was only six-months-old when her parents, Phil and Jayde, rushed her to hospital, concerned that what seemed like a viral infection might be something more serious. Tests revealed the devastating truth: Elsie had a cancerous tumour in her abdomen. Elsie’s dad, Phil, shares their story,

Elsie had been suffering from cold- and flu-like symptoms and irregular bowel movements for a few weeks. On Wednesday, 18 September 2024, her temperature spiked and she became unusually unsettled. We took her to our local GP, who confirmed it looked like a viral infection. That night, however, she remained distressed, and by Thursday morning her tummy was bloated and rock hard, and she had begun vomiting. We knew something was seriously wrong. 

We arranged care for our three-year-old son, Finn, and rushed Elsie to Queanbeyan Hospital. A nasogastric tube was inserted, and an X-ray suggested a possible twisted bowel.

Jayde and Elsie were transferred by ambulance to Canberra Hospital, where the surgical team was waiting. Although Elsie was still smiling and her usual happy self, we could tell something wasn’t right. 

Another doctor initially suggested it might still be a viral infection, but we were asked to stay overnight for observation. On Friday, 20 September (Elsie’s six-month birthday), Jayde was by herself when a team of medical staff walked into the room and delivered the news no parent ever wants to hear: a cancerous tumour had been found in Elsie’s abdomen, along with lesions in the liver. She needed an urgent transfer to Sydney Children’s Hospital in Randwick to begin treatment. 

We were devastated. The biggest shock for us was how fast everything changed — from “a cold” to a cancer diagnosis in less than 48 hours.Phil, Elsie's dad.

Later that same day, an ambulance was organised, and we arrived in Sydney late on Friday night, with Elsie admitted to the oncology ward the following morning. 

Once we arrived in Sydney, Elsie was diagnosed with rhinovirus, and we were quarantined from the rest of the oncology ward. We learned that Elsie’s primary tumour measured 9.4 cm x 5.5 cm and was causing a significant bowel obstruction. The risk of sepsis was a major concern. At this point, she had been nil by mouth since Wednesday night and was barely awake. 

Due to the size of the primary tumour, Elsie’s medical team held numerous in-depth discussions about a course of action.

Surgeons met with us late Saturday night and told us that Elsie would be prepped for surgery first thing Sunday morning to remove the entire tumour. The surgery was going to be long and invasive. She would be in critical condition afterward, require a stoma, and be transferred to ICU.

After many hours in theatre, we received a call from the surgeon advising that Elsie had a poor reaction to the anaesthetic and that it was too risky to continue with the surgery. Instead, they took a biopsy and inserted a rectal tube and a central line in her neck. Altogether, we waited over five weeks for all of Elsie’s biopsy results. 

Seeing her in recovery was extremely confronting — more tubes, lines, and monitors than we could ever have imagined.Phil, Elsie's dad

Elsie was due to receive emergency chemotherapy that night through the central line placed in her neck, but she managed to damage the line. Nurses and doctors spent what felt like hours trying to place a cannula successfully, and she finally received her first chemotherapy late that night. 

A double Hickman central line was eventually implanted to provide safer and more reliable access for treatment. 

In total, Elsie received six rounds of chemotherapy, some as an inpatient and some as an outpatient. Each round required us to travel between Canberra and Sydney, which was exhausting and financially challenging. CT and MIBG scans became routine — every three months like clockwork. 

In March 2025, just days after her first birthday, Elsie underwent major tumour resection surgery.

After six long hours, the surgeons were able to remove the majority of the tumour, leaving only a small sliver close to her sacrum, and her follow-up results were positive. 

Weekly visits to Canberra Hospital for line care and blood tests continued until June 2025, when Elsie underwent yet another surgery to remove her central line. 

She will continue to have scans until she turns five. 

Elsie has handled this journey amazingly. She adored the oncology ward nurses and doctors. Aside from the cannulas, she took every procedure in her stride — even when she was confined to a cot with lines and cords, or fasting for hours before surgeries and scans. We hope she will have no memory of this time, apart from the physical scars she carries. 

Elsie’s diagnosis and subsequent treatment was traumatic and incredibly stressful. It has impacted our family in so many ways. 

Our son, Finn, who turned four soon after Elsie was diagnosed, had his entire world turned upside down. He stayed with friends and family while both of us were in Sydney. He went weeks without seeing his little sister and often had only one parent at a time, as we swapped between Sydney and Canberra for her care.

He is strong and resilient, but it has deeply affected him. Hearing the words “hospital” or “Sydney” can still upset him, and he struggles with being left without us. The Starlight Room was the highlight of his hospital visits and brought him a lot of joy during difficult times. 

For Jayde and me, the emotional toll has been enormous. The early trauma and fear of the worst have been overwhelming. We often joke that we feel like “apprentice oncologists,” trying to learn everything we could to understand what was happening and advocate for our daughter. At times, we feel broken and emotionless. 

No one talks about the post-treatment reality. Treatment ends, you stop running, and then you experience the post-treatment blues.Phil, Elsie's dad

You hear comments like, “You must be so relieved,” or, “I bet you’re glad it’s all over.” However, the devastating reality is that it will never be over. This is something that will affect Elsie’s life forever. We won’t understand the damage done by the primary tumour to surrounding organs and nerves until she is older, and treatment can have life-altering effects and, in some instances, cause secondary cancer. 

There were weeks when we saw each other for only an hour — one parent driving back to Canberra for daycare pick-up while the other stayed at Elsie’s bedside. Jayde often felt torn between being with Elsie in hospital and being present for Finn at home, both of whom needed her to be the amazing mum she is. 

It was especially hard because she missed so much of Elsie’s first year of life and many of those beautiful moments a mother and daughter are meant to share - and the same with Finn. 

We are sharing our story to help increase awareness about this terrible disease. Treatments have to change. Our medical teams have been amazing, but they are forced to treat children with brutal therapies that cause so much trauma. Our hope is that children like Elsie can soon access better treatments that are kinder and deliver positive results faster.  

 

Help Babies Like Elsie

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma.

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