07/05/2026
Huge update for Amelia's Journey!
We finally have an update on Amelia’s next step.
We recently spoke with Amelia’s neurosurgeon again, followed by another phone call to go over the many extra questions we still had afterwards. There has been a lot to process, and to be completely honest, some of it has been incredibly confronting to hear as parents.
Amelia is now penciled in for a craniotomy in early June this year … which suddenly feels very close.
Interhemispheric transcallosal craniotomy.
Interhemispheric = going between the two halves (hemispheres) of the brain
Transcallosal = passing through the corpus callosum (the structure connecting the two brain hemispheres)
Craniotomy = opening the skull
The team feels now is the right time to move forward with surgery due to changes in the tumour’s growth and anatomy, and because they can now see a safer surgical pathway to access it.
We have talked through the reasons for moving forward, the hopes of surgery, and also the heavy risks involved. Those conversations are not easy. Hearing words like memory changes, seizures, stroke, bleeding, death, neurological injury and brain stem, attached to your child’s surgery is something no parent is ever truly prepared for.
One thing we learned during these discussions is that Amelia’s tumour is "attached" to the top part of her brain stem. We still don’t fully understand exactly what that will means or means surgically, as “attached” can mean different things, and there are still questions that can only truly be answered once surgery begins.
What we do know is Amelia needs this surgery.
As terrifying as it is, we trust her surgeon and team, we know this operation is being planned very carefully. Her surgeon has explained that the goal is maximal safe removal while protecting the critical structures around the tumour.
Right now we are sitting in that strange space between fear and hope.
Trying to stay positive while also quietly carrying the weight of how serious this is.
Trying to keep life normal for the kids while internally counting down the weeks.
Trying to be strong while also feeling completely terrified some moments.
Alongside the emotional side of all this, we are also trying to work out the practical side of being away from home for Amelia’s surgery and recovery. While some things are covered through funding, many things are not. We will still have bills continuing at home, travel costs, food, accommodation gaps, and care arrangements for our other children who will be staying back home with family/sitters while we are away with Amelia.
We know times are hard for everyone right now, and asking for help never comes easy to us, but if anyone would like to support our family during this next part of Amelia’s journey, we would be deeply grateful. Even sharing Amelia’s story means more than you know.
More than anything, we are asking people to keep Amelia in their thoughts and prayers as we move forward. She is walking into a very big surgery with so much courage, even on the days she feels scared.
We’ve had quite a few people asking where they can donate/support Amelia during this time, so we will pop the Givealittle link here for anyone wanting it 🫶🏻
https://givealittle.co.nz/cause/amelias-journey-support-during-rare-high-risk
Thank you all so much for the love, support and prayers for our girl.
Thank you to everyone who continues to check in on us, support us, pray for Amelia, and hold our family up through all of this.
We appreciate it more than we can ever put into words.
Love always
🫶🏻🫶🏻🫶🏻
