anna's blog

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

Home for 24 hours

20140204-090522.jpgAnna’s blood cultures from last Thursday showed that she had a bacterial infection – staff epidermidis. It’s a common infection, found on everybody’s skin, but only causes a problem in those people who are immunocompromised i.e. Anna. She’s had it before a couple of times.

She was put on both IV antibiotics and oral antibiotics and we were in sick kids until Sunday. She seemed well enough in herself for us to be allowed home, on the basis that we would return every morning for IV antibiotics.

We came on Monday morning for her antibiotics. Anna was on good form, although also had a cough and cold developing. She was nauseous as usual. She went to school but only managed about an hour before she started to feel unwell again. She came home, went to bed, slept all afternoon and then her temperature spiked up over 38° at about 9 o’clock in the evening.

So we headed into sick kids a&e department where Anna had bloods taken and was checked over. By midnight they decided she was probably well enough to go home but gave us the option of staying in since it was so late. Anna wanted to stay in so we are still here this morning but hopefully heading home very soon. Neither if us are feeling very pleased to be back here so soon.

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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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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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41.2 degrees

Anna is still in hospital and will be for at least another week, unless there is a dramatic improvement. Peter and I alternate staying nights and weekend days, and I cover most of the week days. It is a constant challenge to look after Anna in hospital and Nathan at home, managed with a huge amount of help from lots of you…

Anna’s temperature continues to be extremely high, as you can see below in her temperature and heart rate charts for the past few days. The temperature is the top chart in the pictures and heart rate is the bottom one. Normal body temperature is around 37 degrees (you can see a black line for this on the chart) and anything above 38 degrees is fever or pyrexial. The black dot in the vertical axis of the temperature chart is 38.5 degrees.

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You can see the dips on the chart when she is given paracetamol. Her temperature dips for several hours until it wears off, then goes straight back up again. A lot of her temperatures are recorded at 40.4 because that is the highest that the tempa dot strips go up to. It is probably higher than that. Her last temperature was 40.4 on the strips but 41.2 on the tempanic (ear) thermometer.

Her blood counts are very, very low. Haemoglobin is still around 70 so she has had another blood transfusion. Her platelets and neutrophils are almost zero, and white blood counts around 20.

The medical team are still working to find the cause of the infection but have also considered that the fever and accompanying shakes could be a side effect of one of her (many) drugs. The anti fungal drug she was taking, ambisome, can cause fever and shakes so that has been replaced by another antifungal. She is on several intravenous antibiotics, some specifically for respiratory infections and some more broad spectrum. She is also on drugs to maintain her potassium levels, which had been low, multi vitamin/minerals, and a range of others on demand to address either pain (codeine) or any side effects from the others (eg ondansetron for anti sickness).

She is still quite unwell but not causing the same kind of concern as last weekend. However, it is clearly not good for anyone to have such a high temperature for such a long time, especially a 4yr old girl.

As well as continuing to search for the source of infection, the medical team are now also trying to identify the anticipated progress of the infection. If there is no change, she will have another general anaesthetic on Wednesday and a bone marrow biopsy. The biopsy should show if her blood levels are due to improve or not. Of course, they will add in any other procedures while she is under a GA such as taking a sample of the fluid from the still unidentified lump in her neck and fitting her splints.

The splints are to avoid contracture in her feet. Because she is using her feet and legs so little, there is a very real danger that her ankle muscles will shorten and become resistant to any stretching. So she may regain strength sometime in the future but her feet wouldnt work. She has had splints cast, which she did not enjoy, and it would be easier just to put them on her while asleep.

Anna didn’t want any photos taken for the blog today (she really is feeling rubbish) so I’ve put some in from before her leukaemia diagnosis.

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Temperature 38.9 c

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Temperature 38.9…which means we are back in hospital. Anna is not feeling good and didn’t want to smile for a photo.

Anna’s cough and cold worsened overnight, she was sick and her temperature spiked over 38 degrees.

The routine is then:

We phone ward 2 (leukaemia/oncology ward where Anna is usually treated)
They tell us to come straight through A&E
In A&E Anna is assessed – temperature, blood reassure and respiratory rate
If available, one of the nurses from ward 2 comes down to A&E so Anna knows them (although the A&E nurses tend to know us by now!)
Her gripper is put in (‘plugged’ in to the port underneath her skin) using freeze spray to numb the pain of the needle
Blood samples are taken through the port and an initial dose of intravenous antibiotics are given
Calpol is given orally to reduce temperature
Mouth and throat swabs are taken
Then we are moved up to ward 2 when a bed or cubicle is available and more antibiotics are given through a drip.

There are 6 cubicles on ward 2. We’ve stayed in most of them, except for cubicle 6 which is the 5* room as it has both a window and a toilet. Rooms 1-4 have a window looking out on to the car park but no toilet. The nearest toilet for parent is out of the ward, which is more than a bit inconvenient in the night. I do not like wandering around the hospital at 3 in the morning in my pyjamas when no one else seems to be around. Room 5 has a toilet but no external window. I think, weighing it all up, I prefer a toilet to a window for a short stay!

A fold down bed fits in each room for parents to sleep overnight.

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This used to be the only ward in the hospital where parents were allowed into the kitchen. Many of the children here are long stay (like we’ve been), or have particular food requirements when on steroids. It just made sense to let us do their food. However, since a parent accidentally left a plastic lid on a hot hob ring, causing fire and evacuation, parents are no longer allowed in the (newlyfitted) kitchen. We can leave food in the fridge but have to ask for it. We can’t prepare food for ourselves or Anna and have to go either elsewhere in the hospital or across the road to the CLIC house. That is why I’ll be wandering the corridors of this hospital later with a hot prawn makhani and microwave heated naan bread.

And we are not allowed any tea or coffee on the ward at all. It’s all a bit grim. Hopefully we will be out early next week!

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