anna's blog

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

Some smiles

Anna has been much, much better today.

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She is allowed out of isolation so we’ve been to the shop and chosen a magazine and even been out of the hospital to get a chocolate muffin from the deli.

Tuesday’s X-ray suggests her fracture is healing well.

There has been no vomiting, plenty poos and lots of eating and drinking.

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All the swabs, infection screenings, blood tests and urine/bowel samples have revealed no infection. There is still no real idea of what has been wrong – most likely an unidentified bug – but there is an underlying concern about the similarity of her symptoms to previous significant episodes (that seems to be the medical term for terrifying, life threatening incidents, of which we’ve had a few), in particular the low blood sugar level. So Anna will be referred to the metabolic team. I think she has already been discussed within the endocrinology team. I don’t think there can be many teams at edinburgh royal hospital for sick children who haven’t seen or discussed Anna. Certainly she is known to neurology, oncology, orthopaedics, respiratory, endocrinology and metabolics.

Tonight, she has had a lovely bubble bath and is sleeping soundly.

Despite trying hard not to, she smiled several times today.

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Still on ward 2

Anna continued to be very sick again yesterday but has had a better day today. Once again, she is a mystery to the medical staff in terms of what might be wrong. Her blood glucose levels dropped last night, similar to her septic liver episode, so there has been a full infection screen (swabs from nose, mouth) and bloods taken for culturing. Although it could simply be because she had been so sick! She is still on a cocktail of laxatives, anti sickness, chemotherapy and various other drugs plus IV fluids and liquid feed through her ng tube. She has spent the day with aunt clare and granny and been grumpy and unwilling to speak or be spoken to.

These are her nightly drugs.

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We are hoping for a good nights sleep and a better day tomorrow…

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…and back into hospital…

Since being discharged on Monday, Anna has continued to feel really sick.

Although her temp is fine she is clearly not right. Her fracture is still sore, as is her tummy. Her skin is itching and she constantly says she can’t get comfy. She feels nauseous from the moment she gets up right through to going to bed. We’ve tried going to nursery and tried staying at home. She feels sick wherever she is. And going out any distance in the car almost guarantees vomiting. The general feeling is that there is impacted poo in her bowels which is building up higher and higher.

She is taking anti sickness medication ondansetron and metaclopromide, laxatives lactulose and movicol alongside her usual daily cocktail of drugs, but often struggles to keep them down. I’ve been in regular contact through the week with ward 2, keeping them updated, and they’ve been happy for us to manage it at home as she was still taking enough fluids and food. However on Friday, she was sick every time she had anything to eat or drink so we headed back into sick kids.

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She’s now on IV fluids, and additional, stronger laxatives and anti sickness are to be given. We are about to go down for an ultrasound. The doctors know that Anna has a high pain threshold (she lived with an undiagnosed fractured femur for 2 weeks) and also can become seriously ill very quickly. So they are being ‘extremely cautious’.

Anna is keeping herself as still as she possibly can, presumably to limit her nausea. Like many children, she instinctively knows what to do when she feels ill.

I don’t think she has smiled all week.

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Still sick

Anna is still in sick kids and feeling thoroughly miserable. After being admitted through A&E on fri night, she was put on ward 4 (not the oncology ward) as the hospital was so busy. Peter stayed that night and then I took over yesterday. She was moved to ward 2, where we always feel much more comfortable as they know Anna so well (although we are spending so much time on other wards other staff are getting to know Anna!).

Her temp has been below 38 degrees for 24 hours. The pain from her fractured femur is being effectively managed by morphine and she seems more comfortable but she is still being sick. She is having intravenous fluids through her portacath, and continuing to have her daily chemotherapy dose of mercaptopurine, as well as voriconazole for the previous fungal infection. Her stomach is very bloated and has been for a while now. It could be constipation from the variety of drugs so she is having laxatives. She has started vitamin d supplement and will also now have omeprozole to counter any stomach acid problems.

All Anna can think about is her next meal. She has been asking what will be for tea since 10am.

Nathan had a lovely afternoon at Neil and Courtnay’s fundraising talent show (thanks everyone for a superb effort!!!) and was then picked up by Peter when he returned from the hospital. Nathan knows the routine when Anna is in hospital. He enjoys getting to choose a sandwich and drink from M&S and eat it in the Anna’s cubicle during handovers.

Weekends in the hospital are much easier to manage than weekdays, when Nathan has to be got to and from school as well as someone being in the hospital with Anna during the day. Hopefully this won’t be a long stay…

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Poor Anna

Anna is back in sick kids. It turns out that the only thing worse than having SMA, leukaemia and a fractured femur is having SMA, leukaemia, a fractured femur AND a sickness bug.

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Fractured femur

Anna has a fractured femur. There is a whole story I could tell you but it’s probably quicker if I just give you the facts. It seems to have come from a blow to the leg a couple of weeks ago – probably not a very bad blow but her bones are weak – and then taken time to diagnose as she also has hyper skin sensitivity and a sore bottom. The X-ray, ultra sound and MRI done this week have finally confirmed it. It wasn’t diagnosed during her 3 day stay in hospital last week (with a temperature and sickness).

She is back home with a brace and constant calpol and codeine but still in pain at times and generally uncomfortable. It should heal within a couple of weeks and hopefully not cause any long term problems.

Now we just need to work out how to move her as little as possible for the next fortnight, whilst still continuing with daily life.

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