anna's blog

Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

… And a fractured ankle…

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

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Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

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Shingles and a broken wrist

Anna has had a rash on her back for the last couple of days and a sore wrist the last couple of weeks. Other than that, she’s been on really good form and we’ve had a wonderful time at Callum’s Cabin on the isle of bute since Saturday. We’ve been to the beach, although it turns out the sand is too soft (I’m just glad I managed to get Anna and her wheelchair back off the beach before the tide came in!), had fish and chips down at the harbour, played board games in the house and just enjoyed time together in a beautiful environment.

However, a visit to sick kids today suggested that she has shingles. The sore wrist was x-rayed and turns out to be broken. It’s in a cast. She’ll be in for at least a week, probably more. She is such a brave girl.

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Anna loves school

Anna loves school. Even homework.

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She still misses days due to hospital/other appointments and has regular visitors in school (physiotherapist / outreach nurses…) but overall it’s going well.

Huge thanks to everyone who is making it work smoothly – both staff in school and Anna’s wider team of medical, health and social care professionals.

Last week was her first full week. Long may it continue.

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