19/07/2026
đź’™ A little update from our world đź’™
While so many of you have been enjoying the winter school holidays with your families Illuminate, caravanning, bonfires, sleepovers, cosy nights in and hanging with friends our family has once again found itself scattered across the world, doing the only thing we know how to do.
Fighting for our boy.
I’ve been quiet on here lately and I’m sorry for that. Sometimes the weight of it all makes it hard to find the words. But Xavier deserves for his story to be told and for the people who love him to know where things are at.
Xavier’s recent scans showed that his neuroblastoma has progressed new activity in some lymph nodes while we were managing things with radiation and chemotherapy. It was a hard result to receive. His Curie score went from a 1 to a 4 still low but we like to see 0.
But we didn’t stop. We never stop.
When those scan results came back on Friday 26th June Andrew and I had some of the hardest conversations we have ever had.
I didn’t want to leave Australia.
I didn’t want to leave Andrew.
I didn’t want to leave Izzy and our support network the people who hold us up when everything feels impossible.
But Andrew said something that cut straight through all of it.
“We can’t keep doing the same thing and expect a different result.”
And he was right. He is always right when it matters most.
So we made the decision. We were going.
I was worried about navigating everything here with just the boys and I, but I was so incredibly lucky that my older brother was able to take long service leave and come with us to help. This journey doesn’t just affect Andrew, me and the kids it affects our whole family. Every single one of them.
The Sunday before we left Izzy had her very first hip hop competition.
I was a blubbering mess the entire time crying through her routine, every song, every moment because I knew. I knew I wasn’t going to be there for her next one.
And then my ten year old my fierce, wise, incredible Izzy looked at me through my tears and said:
“Mum stop it, stop crying. We will FaceTime you at my next one.”
I don’t have words for that moment. I really don’t.
We gave Izzy the choice come with us to America or stay home. I feel she hasn’t been able to control much since 2021 so this felt important. She made that decision herself with so much maturity and wisdom it took our breath away.
She chose to stay.
She didn’t want to give up her cheer and hip hop and I understand that completely.
In those moments on that stage Izzy gets to just be Izzy.
She gets to shine.
She isn’t Xavier’s sister.
She isn’t the girl whose brother has cancer.
She is just herself, talented and bright and completely her own person.
She deserves that. She needs that.
She didn’t want to leave her friends. She didn’t want to fall further behind at school. She thought it all through and she made her choice and I have never been more proud of her.
By Wednesday 1st July — just five days after those scan results Xavier and I were already in Hershey Pennsylvania.
5 days from the hardest scan result to wheels up and across the world.
That’s just what you do when it’s your child. 🙌
And from the moment we arrived the pace has been relentless. Every single day has counted.
Thursday 2nd July — we met with Dr Sholler’s team. Repeated urine tests and a new liquid biopsy to get the freshest possible picture of Xavier’s disease.
Friday 3rd July — bone marrow biopsy from both sides and a biopsy of the affected lymph nodes. That biopsy was no small thing. To reach the node they needed to put a camera down Xavier’s throat an endobronchial procedure to access the deep lymph node in his chest.
It was rough.
Really rough.
Which resulted in an ED visit that night.
Monday 7th July — consent signed for chemotherapy. Xavier sat in that room and listened and understood and nodded and held my hand.
Tuesday and Wednesday — chemotherapy.
A new combination Xavier has never had before. Cycle one is running.
I won’t sugarcoat it the chemo was rough.
Really rough.
Nausea, exhaustion, days where he barely lifted his head.
Those days were some of the hardest we have faced in five years of fighting.
Watching your child go through that never gets easier. It doesn’t matter how many times you’ve sat beside that chair it never gets easier.
Thursday — radiation oncology consult.
Friday — CT scan for the radiation oncology team to begin planning.
Monday — simulation for radiation. The precision planning that happens before treatment begins.
Tuesday — bloods. Xavier is neutropenic his white cells are down as expected from chemotherapy but his platelets and red blood cells are holding strong. His body is doing exactly what we hoped.
Every single day. Moving forward. Never stopping.
đź’› The results we have been holding our breath for đź’›
Bone marrow — CLEAR. Completely clear on both sides. Confirmed. No neuroblastoma in his marrow.
Urine markers — normal range. Holding steady.
Liquid biopsy — lower than when we were here in April. Lower. Despite active lymph node disease showing on his scans, the circulating tumour DNA in his blood is already lower than it was at what we thought was his lowest disease point four months ago. The chemotherapy is working. We have early evidence of response and it means everything.
We are now working toward enrolling Xavier in a precision medicine cellular therapy trial called PEACH — the most targeted and innovative treatment he has ever had access to.
For the first time in five years we have a treatment being designed specifically around why Xavier’s neuroblastoma keeps coming back.
Not just suppressing it.
Actually targeting the root cause.
His own T cells engineered in a laboratory specifically around his tumour’s molecular fingerprint sent back in to hunt what’s left.
That feels different to anything we have done before. That feels like hope with a plan behind it.
And yet somehow life here keeps moving forward too.
We have a short term lease in Pennsylvania to call home for as long as this takes.
It feels like we are setting up a whole new life here in Hershey a town I’d never heard of two years ago.
Andrew and Izzy are home in Adelaide, him holding the business and our life together, her shining at cheer and hip hop and school and being exactly who she is meant to be. Our family is split across the world and there is nothing normal or okay about that. Some nights the guilt and the grief and the exhaustion of it all sits so heavy.
And then I look at Xavier.
He is so well. He is so brave. He asks questions about his treatment and listens carefully to the answers. He makes the nurses laugh, teaching them our slang words and everything about AFL.
He has been through more in his 8 years than most people face in a lifetime and he faces every single day with a grace and a spirit that takes my breath away.
He is the most extraordinary human being I have ever known and I will get on every plane, fight every fight, and move heaven and earth for as long as it takes.
And next week the story gets even bigger.
Monday and Tuesday the doctors will be sitting down together for a precision medicine tumour board meeting reviewing every piece of Xavier’s molecular data, his biopsy results, his genomic profile to determine the best precision treatment pathway forward specifically for him.
Tuesday and Wednesday Xavier has his MIBG scan booked — the scan that will show us how his lymph node disease has responded to this first cycle of chemotherapy. We will be able to see whether those active nodes are reducing. Whether the treatment is doing what we need it to do.
And Wednesday — we sit down with Dr Sholler. With the tumour board decision, the MIBG response results, and the full biopsy molecular findings all in hand we get Xavier’s formal precision medicine plan. The path forward.
To our beautiful friends who have reached out during our silence the messages, the check ins, the thinking of yous, you have no idea what those small moments of connection mean when you’re sitting in a hospital room on the other side of the world.
It means everything.
You mean everything.
Xavier’s story isn’t over. Not even close. 💛
https://www.gofundme.com/f/help-xavier-fight-relapsed-neuroblastoma
