...for Rose to be well enough for chemo to go up...she has been laid low this week with daily temperature spikes, sickness, lethargy and general illness. Three antibiotics going in round the clock to try to seek and destroy whatever is doing this to her. New on our radar for anxiety is the fact (blissfully ignorant until now) that the bug she has grown on her blood cultures in the last few days sticks to plastic (hickman line - easily solved through removal and replacement) and metal (prosthesis - not so good and not at all removable). Barometer for anxiety at an all-time high - three more cycles, four more months of being this immune-suppressed, of wondering all the time if that particular bug is going to strike and not respond to antibiotics. Lay awake all night back to where we were eight weeks ago imagining the worst with Rose's leg and not sure how to deal with the worry. Surfing the web in the middle of the night again with a whole new set of questions and worries - not cool.
After a bad start to the day when they decided she was too ill to be taken to her audiology test at a nearby hospital she gradually began to rally this afternoon (ie sat up and played on club penguin for a few minutes for first time in a couple of days!) and although they still weren't happy enough to begin chemo they are going to reassess her tomorrow morning and hopefully take a view that the chemo has to carry on. If her temperature stays down and she starts to take a bit more of an interest in the world around her we will know we have got away with it and the little blue chemo bag can go up.
So today has been all about waiting for culture results, temperature taking and the daily weigh-in - this is Simon's particular stress trigger so the fact she has lost 2kilos in the last 7 days (oh that it was me!) did not help him cope today. She is looking so so thin and has zero interest in food so we are relying heavily on the stomach feeding tube but over the last couple of days even this hasn't stayed down and Rose is becoming more resistant to it so we are having to 'stealth feed' once she is asleep. This alone doesn't get enough calories in to maintain her weight so we will have to start doing day time feeds as well to try to regain some ground. It's difficult not to feel that every day we get a little bit further away from her previous life - and the eating thing is a big part of this. Despite the best efforts of the ward's cooks plus all the snacks she would normally dream of at hand all day long nothing is of any interest to her. Luckily for her I am there to do the decent thing and polish it all off for her...I am going to be 20 stone before this is over.
With Felix away and no need to change hats daily we have both based ourselves at the hospital this week alternating nights on the ward with nights in the parents' flat above the ward - a mixed blessing as although great to be together especially with this week's awful illness we definitely feed off each other's worry and go round the houses voicing the same fears and asking the same unanswerable questions. All of which I do just as Simon has found something to tune into on the tv which might momentarily take his mind off things - so he didn't put up much of a fight tonight when I decided to drive home for a change of clothes! Felix has clearly turned 18 whilst away as after a frenzy of phoning and texting on his first day we have heard NOTHING - can only assume this is the beginning of standard bloke behaviour, that he is having a ball and will turn up at Gatwick on Saturday tired and tanned and happy! It's definitely a watershed for us all - his first family holiday without his family and he will have grown in every way.
So hoping for chemo tomorrow - there's an expression I never thought I'd use...!
