26 November 2009

We are stii in isolation.... Addenbrooks room F is truly the 'naughty step' of Ward C2... I wonder what we did? No windows, no signal... except, for some strange reason, right now, and no heat. There is a strange air conditioning system which blasts out cold air day and night and there's no turning it on or off! Thank you to everyone who rang us on the extortionately expensive hospital phone.... I know you were secretly worried for my sanity! We have everything crossed that Lola's temperature will be below 37.5C at 7pm because we will then be out of that door, night feeds and medication in hand and heading for home. Lola is desperate to sleep in her own bed!
As she is still suffering from pain in her oesophagus, Lola is really reluctant to eat anything at all. Even Mick, the C2 Wonder Chef, is finding it impossible to tantalise her with soft, mushy treats from the kitchen. The night feeds drips in over 12 hours but only provides half of the nutrition she needs so it's really important that she starts to develop an appetite again. Not sure my cooking will do the trick.... Longer term, it's most likely that they will fit a 'peg' which means that she can have a direct stomach feed and do away with the horrible nasal tube. Talking to other parents here, it seems that it's really common for the children in oncology to need them and at least gives me the peace of mind that she's not wasting away (will also reduce the verbal abuse I get when I so much as whisper the word 'food'!!)
We are due back here on Tuesday for MRI scan results and round 3 of the chemo... halfway before surgery. Lola is more curious about that now and I am hoping to speak to the Specialist Oncology Nurse in Birmingham Orthopaedic tomorrow. The surgeon explained to us, the night of her biopsy, that he would be repacing her upper arm and shoulder with metal ones and that they would have screws inside to enable them to 'grow' with her. At the time, that was about all we could take in. Lola is now beginning to be curious about movement, and 'how' and 'how long'. I suppose I am too.
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5 comments:

  1. Chocolate Manda and the Bennetts26 November 2009 at 22:42

    Hi Lola, Menu Suggestion Number 1:
    Room temperature strawberries* dipped in white chocolate, allowed to cool and then double dipped in best quality high cocoa solid milk chocolate (It’s dead expensive but I would take advantage of the fact that Mum wants to feed you and demand Montezuma’s milk chocolate which is particularly good and easy to get hold of.) And certainly don’t put up with any cheap white chocolate. Only go for the stuff made from pure cocoa butter, none of these vegetable oil alternatives. Venezuelan is best. Once you have a plate of these gleaming in front of you (a sign of good tempered chocolate is the beautiful high gloss appearance. Relax a little, and then indulge. It will have a slight brittle crack as you bite into the milk chocolate, immediately followed by the smooth and sweetness of the white, then, if you picked a good fruit, you will have that wonderful tangy (after the chocolate, it’s always tangy,) fresh explosion as all the tastes mingle tantalisingly in your mouth. Leaving you with only one option... to have another bite.
    *I know these may be hard to source this time of year. If you can’t find any with a good ripe, English summer’s flavour substitute for any fruit that you like that can be found and full of flavour. I’m even wondering about an orange as they are good this time of year (although I would prefer to then enrobe first with milk then with a thick layer of dark chocolate with oranges.) hmm.....
    p.s If Mum can’t rustle these up let me know and I’ll see what I can arrange.
    Lots of Love and wishing you all well,Chocolate Manda and the Bennetts

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  2. Martin27 November 2009 at 08:35

    Welcome home Lola :-)

    Manda - can I have some?

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  3. Anna Caston27 November 2009 at 18:48

    I'm dribbling a little bit......

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  4. Martin28 November 2009 at 15:51

    Sausage roll, potatoes dauphinoise, cauli, broccoli & carrots. Turned her nose up at butterscotch angel delight mind. Lovely to have her back.

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  5. Martin30 November 2009 at 08:25

    Oh and it never felt like 'isolation' to me, I had my brilliant little girl for company :-)

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