19/09/2026
“So when are you coming home?”
And believe me, if getting that result meant we could pack our bags and jump on a plane back to Australia, we would probably already be on it. 💛
But unfortunately, that is far from where we are at.
As incredible as this news is and we will NEVER take a result like this for granted!
Xave is responding to his precision medicine protocol, which includes chemotherapy and targeted inhibitors, and we still have a lot left to do here.
So what happens next?
Xave started Cycle 3 of MGT (Molecular Guided Therapy) on Thursday, and this cycle has already been rough.
Yesterday was my birthday and the poor kid kept apologising to me because he felt so sick that we couldn’t do anything. 💔
Obviously he had absolutely nothing to apologise for, but that’s Xave even when he feels horrible, he is worried about everyone else.
For now, Xave will remain on MGT while we wait for the next part of his personalised treatment to be ready.
When we first arrived here, they took a biopsy of Xave’s tumour so they could use his own tumour cells to create a personalised tumour vaccine specifically for him.
Once that is ready, Xave will receive it and then they will collect his T cells again.
The reason they collect his cells AFTER this stage is really exciting.
The aim is for the tumour vaccine to stimulate his immune system so those T cells are activated and recognising his tumour cells essentially getting them firing and ready to attack.
Those stimulated cells are then collected and prepared for the next phase.
The next phase is almost like a mini personalised CAR-T-style treatment. Xave will receive conditioning chemotherapy and then those cells will be given back to him.
This is the part we are incredibly excited about because this treatment is being made specifically around Xave and his tumour.
So while seeing the words “previous sites of disease have resolved” was everything we have been praying for, it doesn't mean our job here is finished.
Getting him to this point is one thing.
Our biggest goal now is keeping him here.
We have watched this cancer come back four times. We know better than anyone that a good scan doesn't mean we stop fighting.
And as much as we are desperate to come home, we still have a long way to go.
We miss Andrew and Izzy more than words can explain. Being separated as a family for this long has probably been one of the hardest parts of all of this.
The conditioning chemotherapy could potentially fall around Christmas, so we are going to do everything we can to hopefully be together as a family for that part. 💛
Financially, being here for this length of time is also incredibly tough. With the exchange rate, the cost of living here adds up very quickly rent, food, car hire, travel and medical expenses continue every single week.
To every single person who has donated, shared Xave’s story, held an event, raised money or supported us from home — THANK YOU.
You have no idea how much it helps.
Every donation is helping us keep a roof over our heads, put food on the table, get Xave to treatment and cover the medical expenses that come with being on the other side of the world.
I will share Xave’s fundraising details again, and if you aren't in a position to donate, please just share his story.
We completely understand how tough things are for everyone at the moment with the cost-of-living crisis. We never expect people to give what they don't have.
But sharing costs nothing and you just never know who that post might reach.
It might land in front of the right person, business or foundation who is in a position to help us keep going.
Even though we received the news we have been praying for, we still have so much left to do here.
For the first time in a long time, though, it feels like we aren't just chasing this cancer every time it comes back.
We are trying to get ahead of it. ❤️🎗️
And that is why we are still here.
https://www.gofundme.com/f/help-xavier-fight-relapsed-neuroblastoma
https://www.rarecancers.org.au/patient-stories/helping-xavier-pudovkin/
