To the decision-makers, planners, funders and leaders of Australian health care,

On World Cancer Day, I found myself back in the same paediatric ward where my daughter’s cancer journey began four years ago.

She survived Ewing’s Sarcoma of the spine. 18 rounds of chemotherapy. Major surgery. Proton therapy overseas because it was not available in Australia.

We are the outcome the system hopes for.

And yet we are here not because of new cancer, but because survivorship is complex. Because long-term effects exist. Because recovery is not the end of the story.

After 15 months of asking for collaborative care, second opinions and follow up that reflects the reality of life after childhood cancer, we were admitted overnight “for observations”.

To a shared room.

Curtains where walls should be.

Machines beeping.

Children crying.

Parents whispering negotiations with exhausted kids at 2am.

And then a child screams, “I’m going to die.”

If you have ever come close to losing your child, those words do not remain background noise. They live in your body long after the night ends.

This is not a criticism of the clinicians. They are extraordinary. I watch them fight for children every hour they are on shift. They carry compassion and responsibility in equal measure.

I said to a nurse, “I don’t know how you do this day in and day out.” They answered, “It’s so rewarding, but so frustrating when we don’t have the right infrastructure.”

That sentence explains more than any report.

Australia has world-class clinicians. But we do not always provide them, or patients, with world-class environments or systems.

Survivorship care remains fragmented. Trauma-informed care is inconsistent. Families are often unheard until crisis forces admission. Privacy is treated as a luxury rather than part of healing.

And while I advocate publicly for proton therapy in Australia, this letter is not only about one technology. It is about the full continuum of cancer care — diagnosis, treatment, and the decades that follow survival.

Because survival is not the finish line.

Children grow up with memories of wards, alarms and fear. Parents carry hypervigilance long after treatment ends. And systems built for acute illness struggle to support lifelong consequences.

We can do better.

• We need infrastructure that matches our medical expertise.
• We need survivorship pathways designed intentionally, not reactively.
• We need trauma-informed paediatric environments.
• We need to listen to parents as partners in care.
• We need national capability so families are not forced overseas for best-practice treatment.

Most of all, we need to recognise that a child being alive is not the only measure of success.

Quality of that life matters.

I am writing as a mother sitting beside her child in a ward that holds memories no family ever forgets, asking that the next family’s experience be gentler than ours.

Our children deserve more than survival.

They deserve a system designed for the life that comes after.