anna's blog

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

Happy birthday, Anna

Anna is five years old today. She’s enjoying her presents – princesses, sparkles, fairies,…

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There’s been a few times in the last year when we weren’t sure we would make it to today – so we’re very, very grateful.

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We’re home.

Anna was discharged around 4 PM this afternoon. Liver function was almost back to normal, blood counts were good, her tummy had reduced in size and everything seemed fine.

Her skin looks much, much better.

The doctors wanted her to stay in for most of the day just to check that everything was okay, so late afternoon we were given the ok, packed up with our medicines and sent home.

20130624-220500.jpg Every time we go in I wonder how we will manage, but we do, and it’s just wonderful to be back home again.

Anna ate a good tea and is now sound asleep, cuddling piggy.

She is to stay off her daily oral chemotherapy for the immediate future, but will continue to have Septrin on a Monday/Tuesday, domperidone twice daily, cholecalciferol (vitamin d) daily and posiconizile (Anti-fungal – four times a day). We also need to return to clinic on Wednesday morning to check her bloods and review her medicines.

I sleep so much better having my two children home with me.

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Nathan

We try and keep life as normal as possible for Nathan when Anna is ill and/or in hospital even though our family life feels anything but normal.

He still enjoys going to school (often having to be dropped off before/after school at friends houses), goes to his activities (again thanks to friends) and spends time with granny every week.

He knows and understands Anna is ill, and needs lots of looking after, but it matters to me that he knows he is just as important and loved, cared for and well looked after. And I don’t want him ever to think that he has missed out on things because of Anna being ill.

It is so lovely seeing the two of them together. Whenever Anna has any treatment at hospital, and gets stickers or toys, she always ask for one for Nathan as well. Nathan is just so good at looking after Anna. Although he did mention on radio lollipop (see below) that she shouts a lot… true!

In the last fortnight, these are some of the things he has been enjoying…

Green belt grading at tae kwon do

20130623-224511.jpg , Bike racing at the Linlithgow ‘velodrome’

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Taking part in Linlithgow gala day

20130623-224955.jpg And being on radio lollipop!

Nathan – you are just wonderful!

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Nil by mouth

Anna’s been nil by mouth for 48 hours. Her stomach was so swollen on Tuesday that she was sent for a scan, and then an x-ray, which showed possible inflammation of the gut. Granny was with her at that point, and when I arrived there appeared to be a whole surgical team in reviewing her, ready to intervene if her condition became worse (ie ruptured gut).

From Tuesday teatime until Thursday teatime she was allowed nothing more than the occasional sip of water. She was very good about it, considering she must have been absolutely starving. Of course, as soon as the surgeons left, her stomach reduced and she was on really good form for the rest of the evening.

After they reviewed her last night, they said she wasn’t yet ready to eat anything she wanted but could have fruit ice lollies. Anna was delighted!

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Her skin is continuing to heal, her liver function is slowly improving, her blood counts are better and her temperature has stayed below 38°C. However, she is still not right and is not going home for a little while yet. And until the surgical team say that Anna can eat anything else , she will be having ice lollies!

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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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Dermatology

Anna was readmitted to Sick kids this morning. Over the past three weeks she has developed increasingly sore and painful red, blistering, peeling raw skin on her hands and, over this weekend, on her face. As well as this, she has had extremely painful blisters and ulcers on the outside and inside of her mouth and on the tip of her tongue. Not surprisingly she has been in extreme discomfort and pain but we have tried to carry on with normal life as much as possible. At least being at nursery or out with me and Nathan temporarily takes her mind off it.

I’ve brought her in three times to be swabbed and reviewed – each time results have come back negative. She’s had three cycles of anti-virals (acyclovir) and one course of antibiotics. And I’ve been in regular contact with Ward 2. Finally this morning, I felt it was getting worse rather than better and I wasn’t managing to keep her comfortable. So we came in.

As is often the case with Anna, it is a mystery. After being admitted this morning, she was referred straight to dermatology and was seen this afternoon. Another new hospital department now involved with Anna!

The consultants here in oncology and now also in dermatology have various views. Most likely, it is a reaction to a drug, reaction to sun light or a combination of both. There was a suggestion of Stevens – Johnson syndrome but fortunately (having googled it) they seem to have decided against this.

Voriconazole, her anti-fungal treatment, can cause extreme skin & sun sensitivity. Septrin, her Monday and Tuesday antibiotic, to protect against a particular lung infection, can cause the kind of blistering and peeling response her skin is showing. She may have had cold sores and the skin condition is separate.

So, to cover all of the above, her septrin and voriconazole have been stopped. She is to have factor 50 sun cream on at least twice a day ( even in bed) and try and be covered at all times. Sunlight through a window, or even sitting in a bright sunny room can be enough to cause the reaction. We will stay in hospital until she starts to show some sign of improvement – at least until the end of the week, I think.

This is Anna when we first came in today…

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And then after dermatology visit…

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And then at bedtime…

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The pictures show how bad her face is, even when covered in factor 50 cream in bed. Her hands are worse. She is half asleep just now but keeps waking, despite good doses of pain relief. I don’t anticipate a good nights sleep but know we are in the best place.

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