More highs and lows in the last few days but that's just the way it will be and doesn't mean we celebrate the highs any less! Rose had a very short week at school last week but she loved every minute of it as always and genuinely seems to be catching up - I can't believe how much she has missed and how little difference it seems to be making but I think that is just the beauty of being so little. Having experienced 'hospital school' at close quarters for so long I realise how little of a long school day is actually spent in maths and english and how much of it is spent just having a fabulous time with your friends. Her reading is fine, there are big gaps in her maths and her writing is very, very slow but she's getting there and is loving the chance to be a regular little schoolgirl with her pencil case and her snack box like all her friends! So when I told her that was that for the week on Wednesday lunchtime she wasn't very impressed...
I squeezed in a couple more emergency physio sessions before the trip to Stanmore in the desperate hope of getting her bent leg down to at least 5 degrees and to get a more confident walk going and the reaction was as hoped a really positive one. Since she was last there in the middle of December she has come on in leaps and bounds - although her walking is incredibly slow and she has a huge, ungainly limp she is really improving. She doesn't use her crutches at all at home any more and goes up and downstairs confidently by herself - I am in fact always about six inches away but I don't really need to be and falling over (on carpet) is getting more frequent and therefore less scary. A big fall on the stone floor on to her knee is what I am hell bent on avoiding so the responsibility still feels pretty heavy but she is slowly getting better at regaining her balance when she wobbles. So when she walked unaided into the gym at Stanmore on Thursday morning they all stood and cheered and praised and - even under closer scrutiny from Tracy who has worked long and hard with Rose's walking over the months - the reaction was still good. A long, long way to go but she's on the way! She may still need to be manipulated under anaesthetic to get that precious last five degrees down and her bend has also lost a bit and is now less than 90 degrees but that will be a surgical decision when we see the team in the next couple of weeks. And although I think it involves grown men sitting on her leg in theatre and is probably not the most comfortable thing for a couple of days afterwards I don't think it would be the worst thing that Rose has gone through by a mile and may actually really help her. So she was prodded and measured and put through all her paces, declared a thoroughly fabulous seven year old on the mend and despatched home again. Phew. All that and the obligatory drive-through McDonalds reward and she was safely back in her own home with another hospital visit ticked off. Cue very large glass of wine and a few tears of relief and achievement...
Fridays we never manage school as the whole hydro/physio thing seems to run from about 9.15 to after 3 including the travelling/changing/recharging so that is a very full-on day and absolutely exhausting. And that's just for me... it really is the most tiring thing and I know it's not just me as by the time the physios get from the pool back to our house they are shattered too! I think it's a combination of the air and water temperature being just off boiling point and keeping the whole atmosphere jolly and active for a whole hour but by lunchtime I have had just about had it and there's still an afternoon of land physio to go - by tea time Rose is absolutely ghastly and I can't get her asleep fast enough. Another five days of continuous Rose supervision down. More wine.
Friday nights bring the seventh cavalry riding over the brow of the hill and the moral and physical support of The Other Parent - generally by then I am too worried/relieved/tired/euphoric/anxious (any or all combination) to do much more than go to bed but it's another landmark in our crazy week and a very very welcome one. To stand a little way back for a few hours over the weekend is keeping my head above water and it's very amusing to see Simon and Rose resume the timeworn script for their physio battles just as she and I do all week. We're even trying to resume some sort of tentative social life and have seen family friends for the last couple of Saturday evenings which is all progress and is starting to narrow the gigantic gulf between us and EVERYBODY ELSE. Very, very occasionally for a split second and if the glass of wine is large enough I can almost stop thinking about Rose whilst simultaneously trying to be sparky and sparkly and it's essential distraction to stop Simon and I staring blankly into her future. And that I suppose is all that lies between us and perfect peace of mind - this weekend she has complained intermittently again of leg pain and we just don't know what this means or how seriously we should take it. On the one hand we've had it drummed into us that recurrence is most likely at the original site, most likely in her first year of remission, that it won't be picked up on a scan because before then she will report pain and stiffness and on the other we are trying to rationalise, to be calm, she's doing lots more than she was a few weeks ago and her leg is reacting etc etc. Round we go on our merrygoround of fear - driving each other slowly but surely mad with worry. And it's Sunday night and the cavalry is packing his bags and planning his exit route and it's all just a little bit scary.
