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.



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.

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.


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!


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.


Bronchial lavage and scope


Anna was due to go to theatre under general anaesthetic on Wednesday. She had a bad cough and a temperature, both good reasons not to go sooner. However, she is not improving and her temperature remains worryingly high so the need to try and find the cause of this infection is urgent. She is also finding breathing hard work and requiring additional oxygen on a regular basis.

So yesterday (Monday) she went first for anther CT scan, and then late in the afternoon, went to theatre. Whilst there, the surgical staff took a bone marrow biopsy, changed her gripper (has to be changed after a week), did an ultrasound and small biopsy of the lump in her neck.

They then did a bronchial lavage and scope. This means using a fiber optic bronchoscope to look into her lungs, and check for any irregularities. Saline is then flushed throughout the lungs and washed out and that liquid tested for a range of infections.

The after effects can be a high temperature (!), coughing, sore throat and difficulty breathing. Anna was in recovery for nearly an hour afterwards as she struggled to breathe easily and maintain enough oxygen in her blood. The medical team were concerned about her temperature not settling below 39 degrees but I did explain that in terms of her current condition that was considered to be in Anna’s lower range. Once back down on ward 2, she was seen by the registrar and the on call physiotherapist was called out for some chest physiotherapy. She was finding it very difficult to breathe easily.

Despite all that, she had a reasonably good night. Obviously both she and I are woken frequently through the night for her obs/antibiotics/infusions/…but she did go back off to sleep again.

The biggest improvement has been in her temperature. The last temperature over 40 degrees was 24 hours ago, and the last one over 39 degrees was 12 hours ago.

She has had 3 physiotherapy sessions today, working intensively on her chest to remove secretions (she is not enjoying that!), a session with the occupational therapist, visits from several doctors and consultants and a review of her input in a nutritional research project.

She is absolutely exhausted. However, she looks a lot better and is clear and articulate especially when telling the physiotherapists to either stop or go away.


The bone marrow biopsy shows no return of the leukaemia (thankfully), and is consistent with infection. Her blood counts are showing small signs of recovery (neutrophils have come up slightly from 0 to 0.06 – normal level should be 2.5 to 7.5).

The fluid from the lump on her neck showed no pus, just blood. Seems to be what the medical staff wanted.

The bronchial investigations suggest a possible fungal infection so her drug regime has been added to, although she was already on anti fungals.

Everyone who has seen Anna today has commented that she looks much better. She is now sleeping.

It looks like she might be improving. I’m hopeful that tomorrow will be a better day.



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