28/01/2026
Next week, I have a meeting with a Member of Parliament.
I’m doing this because I want change — for every child who faces an aggressive or high-risk cancer.
Through our journey with Elenna, I saw firsthand how rigid systems can leave families without options, even when a child is still fighting and still has quality of life.
I’m speaking up for a future where no parent is told “there’s nothing left” while their child is still alive, still smiling, still fighting.
For a system that doesn’t stop at the first closed door.
That doesn’t treat children like identical cases.
That doesn’t rely on a single pathway when a child’s cancer is clearly more aggressive.
I’m speaking up for families who are forced to become researchers overnight — emailing hospitals around the world, chasing trials, waiting on answers — all while trying to hold their child.
And I’m speaking up for the doctors too — so they are supported, not restricted, when a child needs more than what already exists.
Because children deserve more than a protocol.
They deserve time.
They deserve options.
They deserve someone willing to say, “Let’s try.”
Elenna’s life mattered.
Her story matters.
And if sharing it helps even one child have more options, then it’s worth speaking up.
Below is the letter I’ve written ahead of this meeting.
This is what I’m fighting for — in Elenna’s name, and for the children who come after her. 💛
"My name is Maria. I am a mother from North Queensland writing to you after the loss of my daughter, Elenna, who died in 2025 at just three years old from an aggressive brain cancer.
I am reaching out because I believe the current system failed her — and because I do not want other families to be forced to endure what we did.
When our two-year-old daughter Elenna was diagnosed with brain cancer, her tumour was tested and confirmed to be medulloblastoma. We were told by her oncologist that it did not matter what subtype the testing showed, as it would not change her treatment.
She was placed on the standard high-risk protocol ACNS0334 (introduced in 2007) — the same protocol used for children with very different tumour biology and disease burden. We were led to believe her survival rate was around 70-85%.
But Elenna’s cancer was not the same.
Elenna had Group 3 medulloblastoma with MYC amplification — a form of the disease known to be among the most aggressive childhood brain cancers.
Children with Group 3 medulloblastoma with MYC amplification have some of the poorest survival rates of any paediatric brain cancer — around 10-20% when metastatic.
So being told that Elenna’s subtype “didn’t matter” was not accurate.
She had extensive metastatic disease from the beginning.
Her tumour biology was known to be highly aggressive.
More likely to continue spreading.
More likely to relapse early.
Yet her treatment did not change.
There was no escalation.
No individualised assessment.
No attempt to match treatment intensity to disease biology.
There was no acknowledgement that her risk was far higher than that of children receiving the same protocol.
I struggle to understand how a single protocol can be considered appropriate when children present so differently.
Why wasn’t treatment intensified from the beginning?
Why was access to experimental or compassionate-use medications refused simply because they were “not in protocol”?
We were told repeatedly that things could not be tried — not because they were unsafe — but because they were not approved within existing systems.
We were not asking for miracles.
We were asking for a chance.
Elenna still had quality of life.
She was happy.
She was playful.
She was still our little girl.
But instead of trying everything possible, we were forced to watch while the cancer took her.
The MEMMAT protocol — intended only to prolong her life as a last resort — offered no benefit for her. She died just two months after starting it.
It felt as though decisions were driven by protection of systems — of liability, cost, and responsibility — rather than by the urgent reality that a three-year-old child was dying.
When we asked why more could not be tried, the answer was always the same:
“It’s not in protocol.”
But children are not protocols.
If Elenna’s case had been assessed individually — based on her tumour biology, metastatic spread, and aggressiveness — I truly believe she may have had more options - a fighting chance.
Instead, there was nothing more the system allowed us to try.
And that is something I will live with for the rest of my life.
I don’t yet know exactly what the right solution is — but I do know that the current system left our daughter without options.
I am not writing to place blame. I am writing to ask for your help in advocating for change, so that children with aggressive or high-risk cancers are not treated the same as lower-risk cases, and families are not told “no” simply because something falls outside an existing protocol.
I am asking for support in pushing for a system where each child’s case is assessed individually, that treatments are not kept behind locked doors, and where compassionate or experimental treatments can be considered.
No parent should be forced to fight for options while their child is dying, knowing that potential treatments were never even explored.
Elenna deserved more.
I hope you will help ensure that other children are given every possible chance — while they still have time."
