Jack’s Journey with Craniopharyngioma

05/04/2025

15/09/2023

A few weeks back we received news that Jack had been approved to start growth hormone. After a few speed bumps including finding a local dispensing chemist and supplier delays, Jack had his first dose today 😃
Here’s to positive changes ahead 🤞

31/08/2022

This week’s appointment is bought to you by ophthalmology!!!

16/08/2022

2 years ago, Jack had moved from ICU back to the ward. He is such an amazing kid

12/08/2022

Today marks 2 years since we found Jack’s tumour, hard to believe it’s been that long, but also not. We’ve been through so much, and it finally looks like we’re finding our ‘normal’. Hoping the MRI later this month keeps us on this path 🤞

18/07/2022

It’s been tough to put this post together, but I also need to remind myself how far Jack has come. Yesterday was the 1 year anniversary of our flight to Sydney, on our way to Jacksonville, and today is the anniversary of the 24 hours of flying from Sydney to get there. Our boy is amazing, strong and determined!

23/06/2022

Sorry for being so quiet, life has been getting in the way!
Jack is doing well, smashing goals with his physio, OT and psych. He’s attending school full time, apart from appointments, including attending the inter-school winter carnival and playing 3 games of hockey!
And last months MRI showed the tumour is stable and a small reduction in the cysts!