anna's blog

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

Second fracture

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Anna fractured her femur again last Friday.

I was away at my Pampered Chef conference when it happened but both granny and dad looked after Anna, with Auntie Clare taking charge of Nathan. It seems that her bones are so weak that even a bit of pressure can cause a fracture. At the recent meeting with the endocrinology team, ongoing treatment was discussed and it was suggested that we hold off unless she had another fracture. So, having now had another fracture, treatment looks likely to start at some point soon.

The whole week has been quite a juggling act as Nathan is on school holidays. As always, it’s been with help and support from a whole number of people. So huge thanks to everyone that has been involved in looking after Nathan. And of course thanks to everybody has helped me both in the hospital and at home, trying to make sure that somebody is with both Anna and Nathan when necessary. Both granny and auntie clare have spent quite a bit of time at the hospital this week, which has been a huge help.

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It has been increasingly difficult moving and lifting Anna in the house and there has been an ongoing discussion about manual handling over the last couple of months, especially as she prepares to start school. It had been agreed that a hoist be put in place in the house as well as in school. Obviously that has become even more important as she has her leg in a full cast – hip to toe – so a number of people have been busy this week ensuring that the hoist will be in the house on Friday ready for our return home. It’s not been straightforward – there have been a few problems along the way – but once again people have gone to great lengths to make sure things work out for Anna. Thank you. We really appreciate it.

After Anna had her leg x rayed and put in a cast on Friday, she was admitted to the hospital (ward two was full so we came to ward four). Most children would have been sent home but it was felt important to monitor Anna, especially as after previous infections/fractions she has shown signs of poor liver function and associated concerns. This time there seemed to be no real problems. She did spike a temperature on Tuesday (it went over 38°C) but that seemed to resolve itself. Today, she has had her leg recast, with the knee slightly more bent and another x-ray.

Both Oncology and the surgical team have given the go-ahead to be discharged. I’ve had discussions with both the dietician and pharmacist. We are just waiting for medicines and I’m about to pack everything up in the car and head home. A hoist arrives at the house tomorrow and we’ll start practising. Hopefully it will make at least some things easier.

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Fairies and sunshine

It’s always good to be out-of-hospital and back home. It was especially good to be back for Anna’s birthday and party – six excited girls, six pink teddies with fairy outfits and one fairy birthday cake (plus a lot of help from Heather and grandma Veronica). The perfect combination for a wonderful party!

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It’s often hard to describe how many day-to-day activities Anna has trouble with but one particular Birthday present has allowed her to have a new achievement. In the past, Anna hasn’t had enough strength to push and pull a needle through felt In a children’s sewing kit. This time, she was determined to do it and, after a lot of trying – she did it! Here’s the actual moment…

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Although this weather has been absolutely gorgeous (those of you reading this in England and elsewhere should know that even here in Scotland temperatures have been mid 20s this week), It really isn’t what I would have wished for when Anna still seems to have a fairly strong skin reaction to any kind of sunshine. I feel safer being in the house with Anna covered in factor 50 suncream– and then of course frustrated because all Nathan wants to do is go out and play in the sunshine! It’s so difficult getting a balance.

Anna has had a sore mouth today. Having examined it closely for ulcers, blisters, any areas of redness, checked her temperature, examined her elsewhere for a rash, shone a light in to see the back of her mouth for swelling and generally interrogated her about it, I’ve come to the conclusion that it may be a simple childhood occurrence – a baby tooth is ready to come out and an adult one is cutting in. It’s so easy to forget that all these things happen to Anna along with the full range of other medical things.

We’re off to Rachel house children’s hospice tomorrow for a few nights stay. I am so looking forward to it… update will follow.

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