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Thursday 18 February 2016

Day 3

Day 3 . Today we went to the university of Florida proton therapy institute. It was  amazing if a little daunting.
What service. Meet and greet, everything on time and the most fantastic Dr Danny. 
Funny, clever, honest but yet reassuring. Ben in for a tough ride but I know he will be fine. The side effects will be pretty intense. His skin will blister and his throat will be like having the worst sore throat you can imagine. He won't be able to swallow, not even his own saliva. He will get through it. He is amazing.
Today the professor said cure at least 3 times after calling Bens tumour a weirdo tumour!! Ben thought that was quite hilarious but basically what he meant was the behaviour of this tumour is so odd that it is in his eyes a weirdo! He is a professor and never ever seen such a disease in a child or larynx. We always knew Ben was different!!
Ben had a ct to get him ready and his mask fitted. I wasn't allowed in but I have added a photo of what that's like from his practice run at home. Looks scary but he thinks this bit is quite fun!! 
The whole place was just full of bald and frail people. The entrance hall has a craft table where kids with their bald heads we playing. More like they were on a school trip than fighting for life. Amazing.
I felt like I was in a film. Watching someone else's life and not ours. 

After hospital we recharged with s stroll by the beach. I say stroll but kind of mean shuffle which is bens new walk at the moment!

Next stop for day 4 is oncology appointment to sort chemo plan . Will keep you posted xxxx


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2 comments:

  1. Anonymous18 February 2016 at 13:28

    Always knew he was unique, a Tottenham fan and a great kid, totally unique!!! Only Ben could find humour in being a weirdo! I have plans afoot Ben so I will update you as we go along, keep blogging and updating us on how things are going, everyone at Sherrardswood is 100% behind you, Love to you all Leah and Jimxx

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  2. Unknown18 February 2016 at 15:26

    Hi guys - What a truly amazing boy you have there. So lovely to hear they are using the word 'cure' even if it is in the same sentence as 'weirdo'. Look forward to the next installment - and I am sure we're only a day or so away from a 'You'll never guess what Chloe said / did........'!
    Lots of love Sarah & Pete xxxxx

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