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.

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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.

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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.

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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!

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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.

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A great holiday… and now off to school

It’s been a great summer holiday –
Nathan has enjoyed his football coaching classes and outdoor activity days at almondell country Park. Anna has enjoyed Barnados summer club, days out with me and other family, had hospital stays, fractures and various other medical interventions.

Both have loved going away to Rachel house children’s hospice (an amazing place!), up north with granny and dad and, for the last week of the holidays, to (the wonderful) Crieff hydro with auntie Mary and her two girls (and Courtnay, Neil and the children). Thanks all for being there – it made it even more special.

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My plan over the summer was to involve Nathan in as many energetic activities as possible, both to use up his never ending supply of energy and also ensure he was doing the things he really enjoyed as i feel he does sometimes miss out because of Anna’s needs. At the same time, I wanted to allow Anna to be as normal a little girl as possible, and do the same things as other 5 yr olds .

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It’s generally worked out that way – although it seems impossible to tire Nathan out! Anna particularly enjoyed Crieff hydro, where she was able to go into the children’s club along with all the other children (up to 6 hours a day!), eat high tea with everybody, dance at the disco and laugh along with the magician.
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However , it’s also been very, very hard work. Anna’s day time care needs over that period of time has been absolutely exhausting. Even Crieff Hydro, with 6 hours a day in the children’s club, was exhausting as I still had all the overnight care. Anna continues to wake several times every night asking to be turned on to her side or back, usually around 1 o’clock 3 o’clock 5 o’clock 7 o’clock. At the moment she’s tending to be sick both in the night and as soon as she wakes up. And Anna going to the toilet is always a huge effort for all involved – maybe more on this in a future post.

Yet we finally made it to the end of the holidays and Anna starts P1 tomorrow. It feels like a huge event, for all kinds of reasons. I have the same feelings as all the other P1 mums and dads but also I’m very aware that Anna at times seemed unlikely to make it this far.

So we are ready – or at least nearly ready – even though there have been several hiccups along the way. Her uniforms has been bought (after trying on numerous outfits due to her swollen stomach not fitting many things), her school bag is packed, the travel plans are falling into place (taxi company are in the process of ordering and installing the snapdragon lock down system for the car, and Anna’s motability vehicle is on its way), the medical room has been converted, a hoist has been installed and tested and a new P7 buddy chosen.

After a quick trip to A&E this afternoon, Anna now has matching casts on her legs for her first day at school. The left leg cast is on as a precaution after an accident today. X-rays showed no fracture but it will be reviewed on Friday at fracture clinic when the other cast is taken off, which is on following a fractured femur some five weeks ago.

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Both Anna and Nathan are upstairs asleep. Tomorrow is going to be a big day – for all of us.

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