Rose has been at home for three days! It's the longest patch Rose has had at home since the summer when she briefly experimented with the idea of staying out of hospital between chemos and then decided against it...and it's definitely a rollercoaster. Simon brought her home on Friday night full of good karma and how the new approach was to be no physio (?????), lots of fun and all about encouraging movement of any kind - space hopping, bottom shuffling, spider walking - rather than endless sets of boring exercises etc. I can totally see the angle and the hope that her horizons will widen and confidence grow but Rose's comfort zone is the sofa and any attempt to get her to move has been immediately met with 'but Tracy said no physio...' Good karma lasted almost round to Saturday morning and then we fell straight back into our roles of monster parents from hell. Simon had even belted out to Toys R Us to invest in a mini trampoline in hopes that she will start experimenting with MOVING but no, nothing doing, hours of buying and constructing for no payback. That sofa is just sooo safe and comfy...
Felix was over the moon to have her home and the weekend was full of fabulous moments - I had to stop myself from following them round endlessly with the camera but they played games together, made Christmas cards together, watched (hours of) rubbish on TV together, decorated the Christmas tree etc. There was no shift change at the hospital, no boring hospital visits for Felix or long car drives while we relay raced through another weekend - it was the four of us based in one place with nothing looming on Monday morning. Felix couldn't even be bothered to play mini rugby on Sunday - there was a sister to be played with and she wasn't holding a sick bowl for the first time in months. And while the children hung out I did some equally therapeutic stuff - whole cupboards of anti-sickness drugs, Hickman line emergency packs and painkillers were bagged and binned and two boxes of drugs and dressings packed up for the district nurses to collect. There's still a feeding pump sitting on the kitchen worktop that I can't wait to get rid of but until Rose gains another few kilos we are reliant on night feeding through her stomach tube - but we're getting there.
And on Sunday afternoon we went on a family outing for the first time since the trip to the London Aquarium on 21st March - hours before Rose would be diagnosed. And what an outing! Our Clic Sargent social worker at the Marsden had given us tickets to a children's Christmas party at Claridges - a fundraiser and thank you to the (rich and really posh - have never seen so much velvet and black patent in one room!) children of the patrons of Clic Sargent. It was absolutely AMAZING - champagne and chocolate fondue all the way with every imaginable activity, stall and entertainer. Felix: 'Is all this stuff FREE?!' Rose: 'Can I have hair extensions?' A hilarious fake hair in fake hair moment... They did it all - had photographs taken of themselves superimposed on Daniel Craig and Hannah Montana, tattoos, manicures, face painting, made gingerbread houses and jewellery, rode a bucking Bronco, table tennis championship, met St Nicholas etc. We stood pinching ourselves, blinking in the glare of so many healthy children running around and hardly daring to breathe in case the moment was shattered - it wasn't. Over-excited and full of sugar they fought in the car on the way home and that was almost the best moment - real family life. It was a first foray into the outside world and although the logistics of taking Rose anywhere are daunting we did it and it was a world away from my dismal solo trip to Pizza Express in Stanmore. I just wasn't aiming high enough - stopping the traffic in Brook Street and going to the front of the queue for St Nicholas so much more life-affirming!
And today more milestones - Rose visited her school for the first time since March. It was short and very, very sweet. As if nothing untoward had happened we popped in for an hour, learned some clocks and started to write a story - her friends were all very relaxed and very pleased to see her and Rose was absolutely furious when I told her we had to leave to go to a physio session. Maybe this will be the incentive we need so badly to spur her on - fourteen little girls running around and ready to play with...have promised more visits in exchange for more effort with walking.
But just as we were settling into an afternoon of 'fun' physio back at home Rose stopped us in our tracks with leg pain - a niggling leg pain that had started yesterday and bothered her this morning, but by this afternoon was bad enough for tears. A wordless exchange of looks, an hour of worry, worry, worry and then the inevitable call to Stanmore. Monitor it, come back for an x-ray before Christmas, probably nothing. But by then the blood had already drained out of us and the day - a body blow of reality that all the Christmas parties in the world can't save us from a future of worrying and watching.
