Making memories and navigating the rollercoaster
23 November 2025
We’ve had to make tough decisions lately. A few weeks ago we hit rock bottom. But the last couple of weeks have brought some ups. Fortunately we have family supporting us.
The tumor is growing fast, with big bumps on his head. Thanks to donations, we managed second opinions and a novel US blood test that took six weeks. It revealed an aggressive new mutation. The good news: there’s an oral drug that targets it. The hard part: it may work, or not, and resistance can appear overnight. We’re watching closely.
The tumor invaded his eye socket, covering most of it before radiation. He’s blind on the left side. If you saw him move, you’d never know. Children are stronger than adults in so many ways. We’re so proud of him.
He struggled with headaches, nausea, and emotions. He lost a lot of weight. Now with the new drug we have to slow him down from eating.
Ten days ago in Christchurch, Magnus mastered another anaesthetic and CT scan and had radiation across most of his head. He was a champ.
He’s thrilled his Hickman line is gone — no more chemo — and back to playing wildly with water. His big wish was to climb a coconut tree like in Moana, so we flew to the Gold Coast and made memories. If not in bed, he was in the water or exploring. Meanwhile, our Childspace community worked magic in our garden.
From our hearts, thank you to everyone who donated and/or helped us make these memories. We’re still fighting for him, making life as joyful as we can. Right now, he's doing well.
