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Latest News



  • June 2015. Sam is enjoying a really stable priod. His radiation treament in the USA had some positive effect on his tumour & it has now stabilised. He is really enjoying life at the moment, has just finished his 1st year of A levels (2nd time around) & is learning to drive! All good & fingers crossed it'll stay that way from now on!

  • Sams planned 3 monthly MRIs to monitor the success of the proton treatment haven't gone to plan. His first & subsequent scan on returning to the UK showed no progression (obviously good news) from the status just prior to the treatment, but it also showed no improvement either. We are now told it could take up to a year for any proper indications.
     

  • Sam's January 2014 scan was delayed till Feb, we suspect due to admin at the hospital.

  • Sam's May scan has never materialised despite many chases & eventual formal complaints to Southampton General.

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  • 15/09/14 - Sam has finally received his provisional driving licence over the weekend & dad took him out for his first driving experience last night. This has been a bit of a battle. His driving licence has been issued for 3 years, pending further medical qualification which is understandable. What's less understandable is the 10 months it's taken to get through the process of acquiring the licence. Sam turned 17 in Jan & we applied for the licence in DEcemer 2013. Despite several chases, we've only just got his licence through. A lesson for others in the same situation ... apply early, keep chasing & ask for copies of everything so you are aware of who in the chain is delaying procedings. That way you can manage the situation properly rather than just letting things happen.
    Still, he's got it now so look out everyone on the road!

  • 1st September 2014. We are delighted to be giving out our first support grant to support funding for a patient from southern England to go to the USA for proton treatment. The family will be departing later this week & we wish them all the very best.

  • 1st September 2014. Sam has taken the decision to resit his first year of college after disappointing exam results in his AS levels. Did he just do badly in his exams or is this anything to do with the radiation treatment? At the moment we don't know so we'll wait till his May scan!!! & subsequent appointments to discuss it. Paranoid? Possibly, but with a lack of information, possibly excuseable.

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Sam was diagnosed with an inoperable brain tumour in 2006.

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Sam was 9 years old when he was diagnosed with a brain tumour on his midbrain at the top of his brain stem. While his tumour is low grade, the position of the tumour makes even a partial re-section an impossibility without catastrophic consequences.



Treatment.



Among other things, Sam has endured almost 2 years of chemotherapy in the 7 1/2 years he has been fighting this illness. Despite many difficulties the treatment achieved it's objective to slow the progression of the condition for long enough to allow Sam's maturing brain to finish growing. 



He now needs radiotherapy & has been recommended for proton treatment. This is not available in the UK until 2017 at the earliest. The NHS has backed Sam for treatment in the USA. We have been rasing funds to cover all costs (initially there were uncertainties over whether Sam would be eligible for NHS funding) of Sam's treatment, including getting the family out with Sam to support him. Fund raising aimed to cover all medical, accommodation, support costs & maintenance costs for bck home in the UK. Because the NHS have upported Sam's treatment, the bulk of treatment & local suport costs have been covered. There are still considerable costs incurred for which we wll use the money raised, though we anticipate only using a relatively small portion. Any funds raised that are not used for Sam's treatment, support or any recovery at home will be used to help others in need - we plan to run as a charity organisation on return from successful treatment so others can benefit from the wonderful and massive support we've received.

Proton Therapy for Sam

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