22/01/2026
Oh ok then, let’s look at 2016… what a year it was.
Pics 2&3: We went into the New Year renovating our house. An extension at the back, level access everywhere, widened doorways and space for lifts and hoists and all the stuff we hoped we wouldn’t need, but feared we would. So much of what was ahead was out of our control, getting as much of the practical stuff in place, in advance, while not in crisis, felt like a sensible idea. And ya know I’m a VERY sensible lady. The twins were 5, Sam 8. In January we moved into a tiny two bed bungalow for the really messy bits of the building work. I actually loved it there - it was like an extended camping holiday (except indoors, with running water).
Pics 4, 5, 6, 7: In March Sam started a clinical trial at Birmingham Children’s Hospital. We went every fortnight for treatment - I can’t really get my head around that as it was so invasive. Lots of tests and a lumbar puncture under GA. Every. Other. Week. The hope was that the drug being tested would halt progression of NPC. No spoiler, it didn’t work for Sam. But we didn’t know that then. And hope was good. He was in this trial for years. As with everything, he took it in his stride. He’d wake up from the procedure every fortnight and almost immediately ask for his food (quavers and a chocolate milkshake, followed by pizza and chocolate. IMO a TERRIBLE combination but he loved it). The nurses and all the staff were just incredible, and Sam hung out with his gorgeous buddy Mael - who flew every fortnight from Switzerland (so we could never complain about the drive from Leeds!). Monkey was in the trial too. Even though it was a lot, spending that time just with Sam was really special.
Pics 8&9: We spent a lot of time at Roundhay Park - as always. Soooo many ice creams and trips to the cafe.
Pic 10: Street party & playing out - just golden time.
Pic 11&12: one of a zillion pics I have of Sam enjoying time in restaurants/cafés. Man, did he love going out for food.
Pic 12&13: hen doooooo in Portugal and wedding of great mates in Isle of Wight.
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