Things were looking very positive when I last wrote but with Rose's track record it couldn't last! Stanmore had assigned Rose to their senior physio as soon as she got there who had a very no-nonsense approach and was as determined as us to break through the fear Rose has of putting weight down on her leg. Simon led the first shift and sounded cautiously optimistic that some progress was going to be made - predictably the blood results called for a transfusion and she did become neutropenic, we were moved off the ward to a cubicle but it was agreed that she would still be allowed out to go to the gym etc as long as she stayed in her room the rest of the day but a little bit of weight was definitely starting to go through the leg. A long long way off walking but a start.
And then I arrived and it all went horribly wrong! We had one physio session all together which I thought looked pretty good and then took Rose back to the ward for lunch etc before the afternoon session. I had a quick chat with Mr Briggs who was very energised that Stanmore had come out badly in some waiting time league tables, the BBC were on the ward and he wanted Rose and I to be interviewed to say what fabulously rapid and pioneering treatment we had had since March. It was all very exciting and upbeat (we were going to be a Stanmore success story - I liked that!) and we were going to squeeze in another trip to the gym before our big media career debut - minutes later Rose slipped on a wet bathroom floor, her crutch went from under her and she was down screaming in pain in a horrific re-enaction of the day she broke her leg at the start of all this hell. Lights, camera, action of a different kind followed immediately with the prosthetic leg being imaged from top to bottom, ice packs, painkillers etc but the collateral damage far and beyond the damage to her leg (nothing broken, soft tissue damage in her foot) is the absolute reinforcement to Rose that any kind of walking is dangerous and frightening. Aaaaagggggghhhhhhh... We struggled through to the end of the week but nothing was achieved and Rose withdrew totally from any effort to move her leg let alone use it. I don't blame her for how she feels, I can even understand it but we are at our wits end to know how to take things forward and are both now starting to wonder if it will happen for her. I can see how easy it would be to give up, to start to accept that her leg isn't going to work and if we took the pressure off her even for a moment that is what would happen. Despite the support of Stanmore we feel very alone and completely out of our depth - she is booked to go back again now in a month's time when she next has a week's chemo window but this will be our fourth visit back and we are getting nowhere. We know this isn't normal - we know children don't go back once let alone four times and only Rose has the power to turn this around. She doesn't believe it can happen and we can't get past that.
Once home and with no physios looming over her of course she perked up immediately (wretch) and had a lovely weekend with her friends coming over, she even made a guest appearance at the 7th birthday party of one of her schoolfriends which she loved and was really good for her confidence. Was hoping the sight of 15 disco dancing six year olds might spur her on but no perfectly happy to watch from the sidelines...I give up. If it doesn't happen at least it won't be because her parents didn't nearly kill themselves trying. Exhausted and battle-weary from fighting constantly with Rose it's chemo, chemo and more chemo for the next three weeks, back to the Marsden today and onwards!
