GENERAL INFO | thinkingshrinking

Sam's Tumour

Pilocytic Astrocytoma

Sam has a Pilocytic Astrocytoma, which is classified by the World Health Organisation as a grade 1 tumour. This means it is slow growing. This type of tumour can often be removed by surgery but in Sam's case it is too dangerous to remove.

It's on Sam's mid-brain, at the top of his brain stem.

Sam's Medical Team

For all of Sam's treatment so far he has received outstanding care from the very excellent teams in Southampton General Hospital, Hampshire UK & St. Mary's Hospital Portsmouth (now QA Hospital). The people who have cared for Sam & the rest of our family have been outstanding in every respect. You are awesome guys - no names here, but you all know who you are!

Proton Therapy

Sam now needs radio therapy & would benefit from advanced proton therapy which is not available in the UK (though planned to be in 2017). There are sites in various countries that can offer proton therapy for various cancers but only a few that have the experience & equipment needed for Sam. Proton therapy has the same effectiveness as regular photon (x-ray) therapy on the actual tumour, but the advantage is that with more precise targeting, a more defined dose can be administered with less risk of collateral damage to surrounding healthy brain tissue, though the risk still exists.

NHS Funding

The NHS support for Sam's treatment means that we travelled to the USA with coordination from Sam's existing teams which relieved a huge amount of pressure. Funds raised also ensured that we were able to remove some of the living pressures associated with Steve's loss of job & Vicki's unpaod leave for the duration of the treatment. Post radiation treatment we've also been in a position to move forward with confidence that in the event further treatment is needed or other provisions made for Sam's wellbeing, that we have the reserves in place. We are also fortunate to be in a position to offer limited support to other families in similar circumstances in partnership with the excellent NHS team at Southampton General Hospital.

We have nothing but praise for the NHS who have provided such quality care so far. We are hoping they support our application for funding but have to act in case they can't. Any additional funding secured whether or not the NHS can support us will go to help other children in similar circumstances.

For further details relating to the NHS National Specialised Commissioning Team (NSCT), please click here to go to their website. All relevant information surrounding the selection panel, decision making processes & much more can be found here.