Supporting Elyse vs DIPG

13/05/2026

100%

Forever... my kids can count on it. ❤

on IG

13/05/2026

The story below resonates so much with our journey and I think its time it’s taken seriously all around the world, I know there’s more similar cases and getting data together is the way to starting a change! Yes it might not work for everyone, but sitting back and doing nothing is worse than not trying at all! I 100% believe if we didn’t take the route we did Elyse would not be here today, so here we go after speaking with doctors this is our next step,

We’ve made a big decision to look more deeply into Elyse’s tumour. No two brain cancers are the same they’re all different but the more stories I hear, the more questions I find myself asking.

We are currently in the process of having Elyse’s original and most recent scans reviewed overseas by specialists who have no prior knowledge of her background or history and then presenting what we have done to gather all their thoughts.

When the TarGet trial opens here, she will undergo a CSF biopsy to identify her mutations, and from there we’re hopeful a case study can be done based on everything we’ve been through, even to see if there is possible treatments specifically for the mutations it picks up, surgery is still not an option, and I still don’t even know if I would consider chemotherapy just something to take into consideration.

My one wish from all of this is that our journey can help others facing brain tumours. I truly hope that something good comes from this, that we get more answers about why the tumour had such a massive initial growth of 78%, and how, through what we’ve done, it has since reduced by 62% and is now 32% smaller than its original size.

**kcancer

🎗️

3.2K likes, 461 comments. "Saving Gray"

01/05/2026

Week 2 down 🙌🏻 so proud of you Elyse 🤩🤩

19/04/2026

Yay got my tat today 😍
**kDIPG

08/04/2026

Ten whole years, and it still doesn’t quite feel real.

Since its biggest point in 2017, her tumour has reduced by 62% just got results back today and has had the biggest change in one year.

One of the hardest, but also most rewarding, parts of this journey has been the friendships we’ve made with other families walking a similar path. It’s heartbreaking, because we all know what this road feels like… but there’s also something so special about having people who truly understand. I just wish none of us ever had to meet this way, and my thoughts are with you all always ❤️‍🩹

Through it all, there has been strength, more than I ever knew was possible.

My girl has faced more in her ten years than most do in a lifetime. She continues to show courage, resilience, and a kind of bravery that leaves me in awe.

These years have been messy, emotional, and heavy… but also filled with love, laughter, and moments we will never take for granted.

Cancer changed our lives forever… but it did not take her light.
If anything, it made it shine even brighter ✨

We’re now at a new point in this journey. She’s on the list for the TarGet trial, where they will extract CSF fluid to look for mutations. It’s incredible to see how far things have come, especially with how much AI has advanced in just the last few years. We’re holding onto hope this brings more answers and new possibilities.

To everyone who has supported and loved our girl thank you. We wouldn’t be here without you.

And to our beautiful daughter, you are everything
Ten years on, and you are still here, still fighting, still shining 🤍

🎗️🎗️🎗️🎗️🎗️🎗️🎗️🎗️🎗️🎗️
**kdipg

18/03/2026

My superwomen 🦸‍♀️

18/03/2026

Day 3 at intensive therapy 🤩

27/02/2026

Today is Rare Disease Day
A day to raise awareness for the millions of people and families living with rare conditions around the world.

A disease may be “rare,” but the strength, resilience and love within these families is anything but. Behind every diagnosis is a story of courage, advocacy, exhaustion, hope, and fierce determination.

Living in the rare disease world means navigating uncertainty, becoming experts overnight, fighting for care, and celebrating milestones others might take for granted. It’s a journey not many understand, but one that deserves to be seen, supported, and funded.

Today we stand with every warrior and every caregiver. You are not alone. 💛

F**k DIPG and f**k Battens

22/02/2026

22/02/2026

Miss Elyse has been keeping us very busy lately 💛

Seeing her now with a straight back and feet still feels surreal, what a journey it’s been to get here. Most of the hard recovery is behind us, and now our focus is on building her strength back up.

We’re back into the standing frame, trike rides 🚲, and lots of walking in the pool 🏊‍♀️. Step by step, she’s getting stronger every day.

And the biggest milestone, She’s sleeping solid 12hour nights 😴✨
Anyone who knows Elyse knows sleep has never been her thing, up multiple times or awake before the sun. We’re definitely appreciating the extra rest!

She’s back at school a few days a week, getting out and about again, and has discovered a real love for drawing. She’s actually very good at it! we’re especially obsessed with the panda 🐼 she drew this morning 🥰

So incredibly proud of our brave, determined girl and how far she’s come 💕

20/02/2026

Taupō girl Elyse Johnson defies odds of cancerous brain tumour - NZ Herald https://share.google/3SD9Gql4hDRdCrNi0