anna's blog

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

Hospice and Hospitals

20140224-230603.jpgWe seemed to spend most of last week in one or other of the above – both planned and unplanned visits.

We are very lucky to be supported by Rachel house Hospice, in Kinross, part of CHAS (Children’s Hospice Association Scotland) and get to go there several times a year for a short break. As the children were on holiday Monday and Tuesday last week, I booked a couple of nights from Sunday onwards.

20140224-231005.jpg

20140224-231047.jpg

When we are there, I feel like I can be Anna’s Mum again instead of her nurse/physiotherapist/occupational therapist/carer etc. as everything is done for her. I get to sleep for a whole night without being woken by Anna (I’m always so tired from interrupted sleep). I don’t need to use a hoist several times a day to take her the toilet or to give her a bath. I don’t need to give her medicines – the nursing staff will make sure she has them and keep an eye on her temperature. I don’t have even have to help her with her food – she has somebody with her the whole time to look after her. And Anna just gets to be like any other five-year-old girl – doing arts and crafts, chasing people up and down the corridors, watching TV and just generally having a fantastic time. When she is doing all that, Nathan gets to chill out with Xbox or PlayStation or just spend some time alone with me. I always take a book with me as its one of the few places I get a chance to read.

20140224-220345.jpg
A huge thank you to CHAS and all the team who work there. It makes such a difference just knowing we can have a few days there every now and again.

Once we got back on Tuesday, we headed straight down to St John’s Hospital in Livingston to collect her new leg splints and (for the very first time!) school shoes. Because Anna isn’t weight bearing at all ie standing on her feet, there is a very real risk that the muscles in her ankle will start to contract and she will lose the ability to move her foot. The splints keep her feet as close to a 90° angle as possible so that when she can (hopefully) start to weight bear again, her feet will still go into the right position. Her new pair are pink and covered in a butterfly design – all these little aesthetic touches make it a bit easier for her.

20140224-225909.jpg

However, the splints are so bulky that is almost impossible to fit normal shoes over them. The orthotist agreed to order some specialist shoes and Anna is now the proud owner of black shiny patent shoes. They have to be several sizes too big to fit over the splints but even so they look fantastic!

20140224-225951.jpg

Wednesday was Anna’s last official intrathecal (general anaesthetic for chemotherapy to be injected into brain and spinal fluid), along with her bone marrow sample for end of leukaemia treatment. It means an early start – we have to be a sick kids in Edinburgh before 8 o’clock in the morning – and we are usually there until mid afternoon. Although officially it’s the last one, we still have one to catch up next month as she missed several because she was so ill at times. We normally try to do her 4 hour pomidronate infusion (bone strengthening treatment) on the same day, to cut down hospital visits, but we are slightly out of sync so will have to go back in a couple of weeks It’s a logistical challenge every time – making sure Nathan has someone to look after him in the morning when I take Anna in, and making sure I will be back before he comes back from school.

Anna was back at school on Thursday. I got a call mid morning asking me to come down as Anna had caught her arm under the table. For most children that wouldn’t be an issue – probably the worst that would have happened was a bit of bruising. But for Anna, who fractures without even touching things sometimes, it’s more serious. I checked her temperature before giving her some paracetamol and she insisted on finishing the day in school. Her arm continue to hurt overnight but she insisted on going to school Friday morning (golden time is so attractive!). However as it was still sore Friday afternoon, we headed into A&E at sick kids and went through the usual routine – assessment, x-ray, cast. They all know us very, very well by now. Anna has a lovely removable cast – it’s the first time we’ve seen this. It was fitted and then cut and Velcro put on so we can actually take it off for short periods if we need to. It does make a big difference. It’s on for a couple of weeks. She wasn’t keen on me taking a photo.

Mum and Mary came and took me out at the weekend and I also had a wonderful pampered chef night out on Saturday. All much needed!

Just a normal week.

4 Comments »

Second fracture

20130725-212340.jpg
Anna fractured her femur again last Friday.

I was away at my Pampered Chef conference when it happened but both granny and dad looked after Anna, with Auntie Clare taking charge of Nathan. It seems that her bones are so weak that even a bit of pressure can cause a fracture. At the recent meeting with the endocrinology team, ongoing treatment was discussed and it was suggested that we hold off unless she had another fracture. So, having now had another fracture, treatment looks likely to start at some point soon.

The whole week has been quite a juggling act as Nathan is on school holidays. As always, it’s been with help and support from a whole number of people. So huge thanks to everyone that has been involved in looking after Nathan. And of course thanks to everybody has helped me both in the hospital and at home, trying to make sure that somebody is with both Anna and Nathan when necessary. Both granny and auntie clare have spent quite a bit of time at the hospital this week, which has been a huge help.

20130725-212544.jpg

It has been increasingly difficult moving and lifting Anna in the house and there has been an ongoing discussion about manual handling over the last couple of months, especially as she prepares to start school. It had been agreed that a hoist be put in place in the house as well as in school. Obviously that has become even more important as she has her leg in a full cast – hip to toe – so a number of people have been busy this week ensuring that the hoist will be in the house on Friday ready for our return home. It’s not been straightforward – there have been a few problems along the way – but once again people have gone to great lengths to make sure things work out for Anna. Thank you. We really appreciate it.

After Anna had her leg x rayed and put in a cast on Friday, she was admitted to the hospital (ward two was full so we came to ward four). Most children would have been sent home but it was felt important to monitor Anna, especially as after previous infections/fractions she has shown signs of poor liver function and associated concerns. This time there seemed to be no real problems. She did spike a temperature on Tuesday (it went over 38°C) but that seemed to resolve itself. Today, she has had her leg recast, with the knee slightly more bent and another x-ray.

Both Oncology and the surgical team have given the go-ahead to be discharged. I’ve had discussions with both the dietician and pharmacist. We are just waiting for medicines and I’m about to pack everything up in the car and head home. A hoist arrives at the house tomorrow and we’ll start practising. Hopefully it will make at least some things easier.

20130725-212608.jpg

3 Comments »

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…

20130217-111057.jpg

7 Comments »

Cause for concern

20121111-083124.jpg
Anna’s condition has caused a lot of concern over the past 24 hours.

She was admitted last week with rsv, a relatively common but unpleasant cough and cold virus which can have serious symptoms even in otherwise healthy children. Anna’s symptoms are at the severe end of the scale since being admitted last Saturday.

However, her condition deteriorated yesterday afternoon and overnight.

Yesterday, she had a liquid feed going in to her nose through the ng tube in her nose as she was eating almost nothing. It was making her sick so she was having anti sickness medicine as well.

She had blood and electrolate fluids going intravenously through her port-a-cath as her haemoglobin counts dropped down to 71 (they transfuse below 80) and her fluid intake was extremely low.

She had a monitor strapped to her toe to measure her oxygen levels and, because the oxygen is low, she had small tubes up her nose giving her additional oxygen.

It’s not usual to see her with so many tubes and wires.

As the afternoon went on, it became impossible to settle her. She started behaving in a unusual manner, repeating things over and over again, getting her words confused and unable to sleep.

By early evening, it was clear that Anna was very disoriented and confused so the registrar was called. Once he arrived and examined Anna, the consultant on call was contacted at home and asked to come in. By the time she arrived late evening, Anna’s condition had worsened. The radiographer on call was brought in from home for Anna to have a CT scan and her chest was x rayed. Various discussions took place between oncology, neurology and other consultants and it was agreed that the CT scan showed nothing critical (such as a bleed on the brain) and that she would have an MRI on Monday, and possibly a lumbar puncture.

The consultant discussed moving Anna up to the high dependency unit but instead, around midnight, she was moved into a cubicle next to the nurses station here on ward 2, and put on half hourly observations.

The nurses showed me how to use the emergency button in the cubicle. They’ve never done that before.

The evening shift registrars came down to assess Anna around 1am and around then she really started to worry us all. She kept asking for me over and over again although I was right in front of her. She didn’t seem to be seeing anything, although her eyes are working.

The medical staff don’t really know what the problem is and are trying to eliminate possible causes. She is on 3 different intravenous antibiotics to try and cover as many infections as possible. She has an oxygen mask next to her face to maintain oxygen levels. The nursing staff, registrars, consultant on call and HDU were all on alert, waiting to see what happened through the night. There was a ‘low threshold’ for moving her to HDU.

She finally fell asleep at around 2.00am, with me on the chair next to her. I was scared to sleep in case her condition worsened but eventually dozed on her bed. Both she and I were woken at every set of obs (blood pressure, temperature and eye response checked). And at various points in the night she has slept on my lap. Emotionally and physically, I’m exhausted. She will probably go for an MRI and lumbar puncture today, rather than waiting for Monday.

This morning, she is currently fast asleep, her temperature is back down and she behaved ‘appropriately’ (medical term!) when she woke and asked for a drink. She is more comfortable and although there is still clearly a cause for concern, I’m not seeing the same urgency in the medical staff response. Thank goodness. Investigations will continue and I’ll update you once we know more.

14 Comments »

%d bloggers like this: