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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3 smiles

20130615-135128.jpgAnna has been causing some concern.

On Thursday afternoon, she was increasingly agitated. We thought it might be she was in more pain but yesterday morning she appeared very drowsy and slightly disorientated. Aunt Clare was with her and immediately alerted the staff. This triggered memories of her previous significant episodes (i.e. life-threatening) and so there was a fast response from medical stuff.

Tests quickly showed that her haemoglobin had dropped to 65. We would normally expect it to be over 120, Anna’s often sits somewhere near a hundred and if it goes below 80 she would normally have a transfusion. It probably explained why she was so sleepy and so she had a blood transfusion yesterday afternoon.

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Her liver function was slightly off at the beginning of the week and tests yesterday showed her blood clotting was not right. Her body is also creating a chemical which shows that there is Inflammation in the body – ferritin. She normally has her obs (blood pressure and temperature) done every four hours but after appearing slightly confused yesterday morning she was on 2 hour obs including neurological checks all day and overnight. Nobody was taking any chances this time.

Blood cultures have confirmed that she has a bacterial infection – staph epidermidis. She’s had this before, it’s a common infection found on most people but with somebody with a port it can cause complications. She is now on two IV antibiotics – one to specifically treat the staph epidermidis and another type which treats a wide range of infections (‘Domestos’ antibiotic). This infection is unlikely to have caused her liver and blood problems but could become a concern if it gets worse.

Her skin is still red, angry, crusting and peeling off, as it has been the most of the week. It seems more likely now that the antifungal drug, voriconazole, has been the cause of the problem. It has made her skin extremely sensitive and the hot sunshine we’ve had over the last 3 to 4 weeks has meant that her skin has reacted in this way. She is in a lot of pain but her temperature is normal (the one good sign!). She has been extremely brave today, having her face cleaned, which was very, very painful.
It’s also important that her bowels are working properly and that she isn’t being sick so she’s on regular laxatives and anti emetics. Her u and e (urea and electrolyte) are being closely monitored and due to low potassium she is on IV fluids with added potassium.

20130615-185852.jpgShe improved over the day, had a relatively good night and is much more alert this morning (although she is very, very, very grumpy!). Hardly surprising, given the amount of pain she must be in, despite frequent pain relief.

Before Thursday afternoon, when she seemed to deteriorate slightly, it was thought we might get home on Friday. But the way she has been since then means that we will certainly not be going home until she is much improved.

We are very lucky to be here in sick kids where they have such amazing staff. The doctors are looking closely at all of her previous significant episodes, trying to establish any kind of pattern. What seems to be emerging as a possibility is that whenever Anna has any kind of trauma (infection or in this case her skin), her body responds in a similar way. Her liver function drops, red blood count falls dramatically, the inflammation marker in her body rises and, in previous episodes, her blood sugar has plummeted. This time It seems either it’s been caught earlier or the trauma is not so bad. And it means in future we will all be better prepared to deal with these kinds of episodes.

Anna has undoubtedly had one of her more difficult weeks but she has managed to smile three times – once with mark the play volunteer, once with the clown doctors and once with Stevie the clown.

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