We brought Rose home at the end of last week in a slightly sorry state - bit hot immediately and very lethargic even by her standards but struggled through a day or so at home and even took her to see High School Musical 3! Probably very misguided but you try to grab the tiny moment at home to do something normal and every little girl of 6 in the country wanted to see HSM3 last weekend so we gave it a shot but she watched it sprawled on my lap feeling dreadful and whole experience bit grim all round (and that was just the plot...) Not quite the Mamma Mia moment of the summer but hey she's seen it. Not long after that she fell into a totally unrousable sleep which after about 16 hours was really starting to scare me - finally managed to make contact with the Marsden who told me to take her to Kings and with a sinking heart we were admitted convinced that another infection was taking hold and imagining the following week's chemo disappear off the map.
But this time it was a bit more straightforward (holding my breath saying that as the dreaded blood cultures are sitting in the lab hopefully hopefully not growing anything this time but they won't take the anti biotics down until its negative) and after 24 hours of fluids she perked up enough for a transfer to the Marsden. Could it possibly be that the worst was not going to happen for a change?! Can't believe we got away so lightly and that chemo went up as planned on Monday - doctors slightly reluctant as she is somewhat more knocked for six than normal but finally they gave her the all-clear and the hideous methotrexate went up overnight.
Today she has been very wobbly - physically and mentally. She was off her feet all weekend and last night had chemo so she shook from head to toe as we tried to get her out of bed and up to physio, very tearful, very frightened, very low. Abandoned it until tomorrow when a child psych is coming with me to physio to try to help Rose perhaps talk about her fears and feelings around the whole walking thing. Simon and I are totally and completely out of our depth and things have gone so far back in ten days that she is as weak and fearful as she was post-op in July. Everyone is now acknowledging the walking is a major problem - which in some way is a relief - but no one really knows how to break through it. Fingers crossed for this new cast member in the theatre of Rose's life but I haven't yet met a healthcare professional that Rose can't outmanouevre so not holding out too much hope! If she could only channel a fraction of her stubborn, single-minded, bloody-mindedness into getting off her bottom she'd be jogging round Sutton by now...she doesn't get this from my side of the family for sure. We're all perfect.
We're back in Room 9 at the Marsden which makes me very nervous as at exactly this point in the last cycle we came in for four nights and stayed 16 in Room 9! Keeping windows open, fan on, duvet off and feeling Rose's forehead every three minutes which I find is a really relaxing way to pass the day - praying to a god I don't believe in to let the last few weeks of chemo be kind to her and to let this whole crazy journey come safely to a stop. Everyone here has their own awful story to tell and in snatched moments over the kettle and the microwave we count down each other's treatment plans, share the day's blood results and their implications as readily as we share new ranges from Tesco's Finest ready meals! One mother said to me tonight 'I tell myself there's always someone worse off than me. And then some days I wonder if I'm that person'. So tonight I'm typing this in the dark alongside my sleeping Rose waiting with great excitement for the second episode of Spooks and praying to the god I don't believe in for Rose and every sleeping child on this ward.
