Neuroblastoma in Toddlers: One Mum's Story Every Parent Needs to Read

Tiny Hearts

Zack's Story

Zack was 16 months old when he was diagnosed with Neuroblastoma in July 2025. But his family's journey began six months earlier. Six months of appointments, dismissals, and a mother who kept showing up.

The six months before diagnosis

For half a year, Rhenay watched her little one. Something wasn't right. She couldn't name it in clinical terms, but she could see it.

In her own words:

"The lead up to this was 6 months of back and forth to GPs and paramedics and hospitals due to being sick with unexplained temperatures, high blood pressure, bruising around the eyes and bulging of the eyes. I was told it was just due to his age and learning to walk and that it would clear."

Unexplained fevers. High blood pressure. Bruising around his eyes. Eyes beginning to bulge.

Each time, she was given an explanation. Each time, something didn't sit right.

"A blood test told them he had some form of viral infection but they couldn't tell me what it was. I tried to push for a CT of his head and was denied multiple times because of the radiation exposure."

She asked for more. She was told no. She went back anyway.

The weekend everything changed

The Friday before Zack's diagnosis, Rhenay took the day off work because he had a nosebleed. Another GP visit where she was told to monitor him and go to ED if it persisted. It didn't so she went home.

Then came Saturday afternoon.

"He vomited his lunch up and I happened to catch it and noticed blood in it. I could have assumed it was dry blood from the nose bleed. However I wasn't risking any chances."

Rhenay had every reason to explain it away, a reasonable explanation was right there but something in her gut said this was not right.

"I called 13HEALTH because of the past several months of getting nowhere and sitting around to be told to go home. I was advised to go to ED within the next 4 hours after explaining everything over the phone."

She packed the nappy bag and went in. Triage told her it was probably thyroid issues. She was pushed to the waiting room.

It was getting late. She asked for a room to breastfeed. And by chance there was a paediatric doctor on that night who wasn't usually there.

"She assessed him and said we are going to get a CT scan after I explained everything to her."

Someone finally listened.

3am. The news no parent should hear.

"At 3am on Sunday she came in with the devastating news that he had a mass behind each eye that was pushing his eyes to bulge. She believed it to be Neuroblastoma. We were then transferred immediately to Brisbane Queensland Children's Hospital and haven't left."

Neuroblastoma, behind both eyes. Zack was not yet two years old.

What Zack has been through since

Since that 3am diagnosis, Zack's journey has been relentless.

In Rhenay's words:

"Since then he has had five rounds of chemotherapy, surgery and one stem cell transplant. Zack was meant to have two stem cell transplants however a CT and PET scan showed that the tumour had metastasised and he had relapsed. It wasn't responding to treatment."

He relapsed and is still fighting.

"In the past few weeks he has required another blood and platelet transfusion, different chemotherapy combined with immunotherapy and is currently undergoing targeted radiation on his right eye."

And the road ahead is long.

"It is going to be an extremely long uphill battle to fight and get him to remission. Our oncologist has had results back from ZERO2 after a recent BMA and biopsy of his head that has shown a 42% ALK mutation. Next week we start an ALK inhibitor before looking at more and different chemotherapy options."

"It is however getting to the point in treatment options that we will have to travel overseas to save his life and give him the chance to have a childhood free from cancer."

What Zack's story can teach us

Rhenay noticed things other people dismissed. She noticed unexplained fevers when doctors saw a viral infection. She noticed periorbital bruising when doctors saw a toddler learning to walk. She noticed blood in vomit when she could have put it down to a nosebleed.

Her observation and persistence and the refusal to accept "he's fine" when she could see that he wasn't led to his diagnosis.

If something doesn't feel right with your little one, go back. Say it again. You know your child better than anyone in that room and you are the voice for your little one.

What is Neuroblastoma?

Neuroblastoma is a cancer that develops from immature nerve cells and most commonly affects children under five. It can occur in the adrenal glands, abdomen, chest, neck, or near the spine. Symptoms can be easy to miss or attribute to other causes. Which is exactly what makes stories like Zack's so important to share.

Signs that may warrant further investigation in young children include:

Unexplained or persistent fever
Unusual bruising, particularly around the eyes (periorbital bruising)
Bulging or protruding eyes (proptosis)
Abdominal swelling or a lump
High blood pressure in a young child
Persistent pain or irritability
Changes in bowel or bladder habits

This is not a checklist for diagnosis but a reminder to trust what you see.
And to keep going back if you're not getting answers.

How you can help Zack

Rhenay and Zack's family are now fundraising to access overseas treatment that is not available in Australia. If you would like to support them, you can find their GoFundMe here:

Help Zack access life-saving treatment overseas

Every share matters. Every dollar matters. And every parent who reads this story and feels seen. That matters too.