anna's blog

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

First week of school

Anna has had an exciting, busy but also traumatic first week of school.

She’s managed to stay in school for the first two days, successfully used both the hoist and toilet (a major achievement which required some serious bribery!), learnt ‘0’ and ‘a’ and played with her friends. We have travelled together in the school taxi with Anna in her manual wheelchair (once she is back in her snapdragon and the school taxi has the necessary adaptations, she and Nathan should be able to travel together every morning and afternoon in the school taxi).

However, she has been sore and uncomfortable since both legs are now in a cast. She’s had to have a long nap each of the first two days, she has struggled to eat and drink both in school and at home and feels nauseous most of the time (she carries a sick bowl with her everywhere she goes). Her NG tube came out last week when she was being sick, so we weren’t able to top up her fluids and feed in the normal way i.e. giving her water and overnight feed through a tube. She has needed to go straight to bed when she has come home.

Day three wasn’t successful. She went to school in the morning, I went back down around 9:30 AM to give her some morphine for the pain and finally brought her home around 10:30 AM. I rescheduled her appointment for her ingrowing toenails to be dealt with because the podiatrist can’t get in under the cast (and she is so sore already) and after discussion with the hospital about Wednesdays chemotherapy clinic visit, rescheduled it to Friday when she already has a visit to the fracture clinic so we only needed to go in to sick kids one day this week.

The community nurse came out in the afternoon to put a new NG tube in so we were at least able to give Anna fluids and some liquid feed.

On Friday morning, we headed in to sick kids. We started in ward 2 where she had her gripper put in and bloods taken. After that we headed down to the fracture clinic where she had an X-ray, saw the doctor twice and then had the cast on her right leg removed. We then went back up to ward 2 to check her blood results, and hopefully have her vincristin (Chemotherapy) after which we would be able to go home.

Unfortunately, that’s not quite what happened. Her haemoglobin is low (88), which probably explains the extreme tiredness she has had this week. Her blood isn’t clotting as well as it should be and her liver function is not good. It’s similar to how she has been at other times after either having an infection or suffering a trauma. She was immediately admitted and will stay in initially for 24 to 48 hours for observation and have a blood transfusion today. We hope that we have caught it early and that her condition doesn’t deteriorate in the worrying way seen in the past. Apart from the pain in her legs and being very tired, she is in good spirits. She was calm and settled when I left her last night.

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So rather than taking her home yesterday afternoon, I had to put plans into place for Nathan to be looked after for the afternoon (no school here on a Friday afternoon), get Anna settled on the ward and then drive back home to get Nathan and take him back into the hospital. The nurses and music therapist looked after Anna while I was away. Peter was going to stay overnight with Anna, so I waited at the hospital while he drove home and back to get his overnight bag. Both my car and phone turned out to have flat batteries, which delayed me slightly, but I’m impressed at the speed of the service offered by the AA. They arrived to recharge the battery within about 20 minutes.

Nathan and I slept at home. I’ll take him to his tae kwon do this morning and then we will head back into the hospital and I’ll stay in tonight.

Both Anna and I have been looking forward to her going to school for a long time. I’m just so grateful that she made it in on her first day, even though the rest of the week has been a bit difficult.

I don’t think I have felt as emotionally and physically exhausted and drained for a long time. Next week must surely be better.

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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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