My Story

In December 2022, my son Sam discovered he had a nerve tumour in his spine, which was a result of a nerve cell mutatiing.    Sam endured a long operation that month - the day after Boxing Day in fact - to remove a 9 inch tumour from his spine, and started on his recovery journey which involved him learning to walk again, regaining his fitness and regaining his strength.  

In late 2023, Sam discovered there were more tumour pieces further up his spine, and surgery was, and still is not an option due to the high risks involved; there is a very high risk of paralysis     The only option was radiotherapy and Sam underwent 33 sessions of radio in early 2024, from his brain, all the way down his spine to put the tumour pieces to sleep - hopefully they will sleep for 10-15 years, but only time will tell. 

Sam's tumour contains glioma cells which causes brain tumours and we remain lucky that, at the moment, the tumour pieces have not moved upwards to Sam's brain. 

Nerve tumours are very rare, and whilst they are mostly benign they can cause seizures, co-ordination issues as well as balance issues etc.    They can also affect the function of other organs and glands in the body, such as the thyroid and the kidneys.  

Since radio has finished, Sam has undergone full body scans, from the brain down to the bottom of the spine every 3months and as at the last scan, the tumour pieces seem to be static  - we hope this will continue at Sam's next scan in January.     Sam's scans are now being taken every 4-6mths instead of every quarter which takes away some of the worry and pressure waiting for the results.  

Sam will continue to have regular scans for the rest of his life to monitor the movement and any growth of the existing tumour pieces, and to see if any more tumour pieces have started to appear. 

Sam will also undertake regular blood tests to check out his kidney function, and thryoid function etc, plus regular sight tests etc to monitor any lasting effects from the radiotheraphy.  

Having radiotheraphy sadly increases the risk of other cancers, so Sam will continue to be monitored for any signs of the disease for the rest of his life; cancers such as skin cancer carry a much higher risk.  

Nerve Tumours Uk is the UK based charity working for and providing advice to people affected by Nerve Tumours and NF1 & NF2.

Its such a rare disease and so it needs as many funds as possible to continue to provide advice and research into Nerve Tumours. 

Until Sam found out about his tumour, we had no idea that NF1 and NF2 and Nerve Tumours existed, let alone how they can change your life in literally one second. 

This year Sam will be running the 26.2miles of the London Marathon My Way as well - so we wil both be running it - a family event!

So if you can donate anything, however small, it will be so much appreciated by the Nerve Tumours charity - its such a rare disease that any amount of funds - however small, are so welcome!

Let's bring on the miles and start the Marathon Training Block!!! 

Thank you all so much - last year was amazing and we go again in 2026!