anna's blog

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

Shingles, fractures and steroids

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Anna is still in hospital. She’s now had a further two weeks of intensive anti-viral treatments, with the accompanying hyperhydration and anti-sickness drugs. Yet she still has shingles, with a new spot appearing even yesterday. IV acyclovir is generally the most effective treatments for shingles But for some reason it doesn’t seem to be working effectively for Anna. We are currently waiting on the results of blood tests to check how she is responding to the aciclovir.

She has her sixth fracture of the year – in her left ankle. Her bones are now so incredibly weak that the slightest trauma can break them. It’s the result both of being non-weight-bearing and also the steroid treatment. We are trying to use the hoist for any kind of moving and handling. It’s the safest way to do it.

Anna’s recurring infections (potentially life-threatening) and increasing incidence of fractures mean her consultant and medical team have finally come to decision that she will have no further steroid treatment. She would have been due a further five steroid doses before the end of the leukaemia treatment. I’ve found it a really difficult decision and I’m getting emotional again even when I write this. I just want to feel we’ve done absolutely everything to beat the leukaemia. There’s no point in having strong bones and no infections if she doesn’t survive the treatment. I trust the team and know that this is not been an easy decision and there has been a lot of thought and discussion. It’s still hard though…

Nathan is struggling. He’s missing me and he’s missing Anna. I’m so lucky to have good friends who will take him in the morning and after school (thank you Aileen, Louise and Courtnay…) but all he really wants is to be home in his usual routine. I’m making a point of trying to drive back from the hospital to pick him up from school and then bring him back to the hospital so at least he can see me and Anna. And granny, grandma and Clare are all helping out to allow me to do this.

Princess Anna, as she now wants to be known, is on really good form, despite all the difficulties. She is very clear about what she wants, makes people curtesy when they come into the room and and scores them and me for how
well we’ve hoisted her.

I really hope we see improvement tomorrow. It feels like this is never going to end but I know that it willl.

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… And a fractured ankle…

Anna’s shingles are not too severe and she is recovering well. However, the treatment for it (IV aciclovir) is causing her extreme nausea and fairly frequent vomiting. She feels absolutely rubbish.

Her right leg has looked a bit odd and I asked the physios and doctors to check it. She had it x-rayed and it is fractured too. Just like her wrist, it has happened at least a couple of weeks ago and is now already healing. It is slightly displaced but fortunately should become straight as she grows and the bone develops. Her muscle looks like it is starting to waste which is a serious concern. Physio are coming back tomorrow to review it.

Her blood results have dropped today and she’s had a blood transfusion this evening. She is still getting massive amounts of IV fluids (electrolytes). We’ve tried to give her usual feed over the last few nights but she is simply not tolerating it at all. These are all her tubes and bags hung up, attached to either her NG tube or port a cath (direct into her bloodstream).

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Although she is appearing quite well in herself (apart from feeling so sick all the time), there are lots of things happening. None of it is enough to cause serious concern at the moment but as usual we’re watching very carefully. Luckily she’s had auntie Clare and granny here at various times today to keep her amused and distracted.

Just now, she is coughing, has just vomited and is waiting for her next dose of aciclovir along with antiemetics. She can’t get comfortable and feels so nauseous that we’ve asked the doctor to look at her. Her stomach is severely distended. I’m hoping that both Anna and I have a good nights sleep but I think it’s extremely unlikely.

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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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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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