Get George Moving

Apologies for the long wait for updates…inhibitor treatment of Trametinib has given George some nasty side effects since August. Many skin wounds, skin issues, fatigue, sickness, a few more hospital stays and the rest…but George is made of stronger stuff! Not only is he still at school full time (thanks to the amazing staff who have nurtured and supported him since S1) but doing 1 day a week at Borders College and loving it!

Its been a tough time but again friends and neighbours have stepped up and helped and we really appreciate this. The best news is that after only 10 weeks of treatment his October MRI scans showed improvement and tumour disease in brain has reduced so the battling is worth it. Image below by permission of George shows his original pre treatment head scan (right) with white area in centre the disease compared to left MRI head scan taken in October… we arent getting ahead of ourselves but its a relief to see after the battering George has taken. Next step is to try and get some support moving forward as we sure could do with some… George is still desperate to live his life like any 16 year old!

First day of final year at school… and in treatment again. This boy has some courage! To come so far is a huge achievement in itself as he approaches 11 years battling this disease. Think Sweep wanted to go to school too!

Back at hospital for the weekly checks, bloods etc. Really nailed the needles this week on his own. Its not something that gets easier with time! Helped by his fab Lochranza team though! Week 1 of Trametinib done…

George has had a rough year which is why we havent posted. He has a number of hospital admissions due to increased seizure activity and has been experiencing other unpleasant symptoms. He also has received confirmation of his Learning Disability along with Autism on top of his many other challenges and despite this being last year are still trying to get support for him especially as he is in S6.

Back to the tumours. We learned from scans in December that his spinal tumour was ok but the brain disease was possibly progressing as MRI showed enhancement.
With George being so rare, his amazing team at RHCYP Edinburgh came up with a plan to rescan in May 2025 and then if progression continued, begin further treatment.

He has previously had over 2 years of chemotherapy which doctors confirm doesn’t really work on Georges rare tumour type so the plan was to begin a daily Trametinib inhibitor medication which they felt optimistic about using but it is not without some notable (and scary) side effects which is why it hasnt been used before for him.

Fast forward to April 2025 and after another spell in hospital an early scan showed continued enhancement with the brain tumour being “bulkier” so Doctors allowed us to have our family holiday before commencing treatment this week.

George is as perky as ever at the moment and says he feels his life is amazing despite all of this. He refuses to see negatives, only solutions needing found so we will take up this third set of treatment and follow his lead.

Thanks so far for all the messages as they are truly appreciated. George has been dealing with this for nearly 11 years. We will keep you posted xx

Longer post will follow… back on the treatment treadmill for the third time… we have been quiet this year as George has had a tough one resulting in starting Inhibitor treatment…fingers crossed 🤞

Well, we have been a bit quiet lately as George recovered from his 22nd neuro surgery (stitches wouldn’t heal so a first set of staples!) but today after only weeks from his operation he competed in the SDS National Junior Swim Championships winning Gold! It was also 5 years today since winning his first national medal! Sorry for any of you who are squeamish but George insists we post the staples photo! So grateful to all who continue to support George. Next up this month: scan time again so fingers crossed 🤞 😩🥇🏊‍♂️