Bundaberg woman Cheryl Byrne calls for rise in pediatric check-ins after niece’s cancer was missed

Queensland Health insists it has “gold standard” procedures following a family’s plea for change to the system, after their girl was misdiagnosed for months as cancer spread to her bones.

Luna was diagnosed with high-risk stage four neuroblastoma, a cancer with a 50 per cent five-year survival rate.

Little Luna Kemmery was just 11 days old when she was first admitted to hospital but it would take nearly two years for a diagnosis for her pain.

For months, Luna’s pain was dismissed as constipation or urinary tract infections.

It was pain that would cause screaming at the slightest touch on her abdomen.

Despite airing constant concerns over the distress their child faced, mother Samantha Byrne said she and her partner Taylor were often dismissed as young, first-time parents and were even told by a doctor, “children get sick, deal with it”.

In July 2023, Luna was finally diagnosed with neuroblastoma cancer, an aggressive disease that forms from immature nerve cells.

Luna was diagnosed with high-risk stage four neuroblastoma, a cancer with a 50 per cent five-year survival rate.

It was a clear act of defiance from Luna’s parents that finally got her diagnosed.

They demanded an ultrasound, which revealed a mass growing inside of Luna.

When the cancer was finally discovered, it had grown to the size of a grapefruit and was taking up valuable real estate inside Luna’s little body.

Since being diagnosed, Luna has been in and out of hospital undergoing intensive cancer treatments with expected side effects from treatment including hearing loss and later onset leukaemia.

Despite being cancer-free, her treatment continues and her family has begun exploring options to prevent a future relapse including a $400,000 drug being clinically trialled in the United States.

While the drug is showing positive results, the family is still nine months away from qualifying for the medication, which is currently not available in Australia, and has created a Go Fund Me fundraiser to share Luna’s story and help pay for ongoing and future health care.

Taylor Kemmery, Samantha Byrne and their daughter Luna Kemmery.

Luna’s aunty Cheryl Byrne, a former intensive care nurse, is calling for all Australian children to have access to six-monthly check-ups and improved access to specialised pediatric teams.

“For Luna, there were many missed opportunities for an early diagnosis, despite Luna’s parents constantly seeking medical assistance for her pain symptoms like refusal of food, difficulty settling and later staggering gait,” Mrs Byrne said.

“However, this was not followed up on, due to assumptions of urine infections or constipation being made, without simple non-invasive investigations like ultrasounds being performed.”

“Luna was not diagnosed as a stage four neuroblastoma until she was 22 months old, when this aggressive tumour had spread to her pelvic bones.”

Miss Byrne has welcomed the call from her aunty on behalf of her own family and others she has encountered within the health system who share stories heartbreakingly similar to her own.

Scans show the size of Luna's cancer when it was finally diagnosed within her little body.

“I have spoken to four other parents which we have met since being in the oncology unit and every single one has faced the same experiences, even with a different type of cancer,” she said.

“It’s a very common pattern among oncology patients.”

Miss Byrne hopes that by having dedicated check-ins with pediatric specialists regularly, their concerns as first-time parents would be less likely to be dismissed by GPs and health staff who don’t specialise in child health care.

“It was very frustrating because we kept getting dismissed by multiple GPs, it riles us up a lot,” Miss Byrne said.

“This is still happening to this day, with treatment in this hospital, we are still having to fight and fight and fight, we are still having to fight after diagnosis.”

The family has begun contacting the state government in an attempt to introduce the six-monthly check-ins with specialised pediatric teams.

A representative of the Australian Medical Association of Queensland commented on the difficulties the family faced during diagnosis and said “any time a child is sick is distressing and our hearts go out to this family”.

The AMA and Queensland Health said Ryan’s Rule was in place to give families and patients a voice when they felt they were not being heard.

“Queensland Health’s Ryan’s Rule process is considered a gold standard for patient-led safety,” A Queensland Health spokesman said.

“The three-step process provides a means for patients, families or carers to escalate concerns about a patient whose condition they believe is worsening or not improving as expected.”

When discussing the calls from the family for more dedicated pediatric care, the spokesman said hospital and health services across the state offer “readily accessible child health nurses”.

“These nurses provide vital support to parents and carers and ensure essential health checks for children at key ages, all free of charge,” he said.

“In addition to these services, Children’s Health Queensland offers a range of free programs to support the health and wellbeing of Queensland children as they grow, delivered both in-person and through telehealth.”

Originally published as Bundaberg woman Cheryl Byrne calls for rise in pediatric check-ins after niece’s cancer was missed