anna's blog

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

Happy birthday

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Happy 6th birthday, Anna. My gorgeous, beautiful Princess.

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Butterfly

Since having her NG tube removed, Anna has been really excited about getting her face painted. For the last couple of years she’s only ever had half a butterfly to avoid her NG tube.

Finally, she’s had a full butterfly. A big thank you to the girls at playbugs in Linlithgow for giving her this extra special treat. X

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No more medicine

We were at sick kids yesterday for Anna’s monthly four hour pomidranate infusion (bone strengthening treatment). Her bloods were checked and her white blood count was so good that the doctors decided she could stop taking the last two preventative medicines – Septrin (anti-viral) and Posaconazole (antifungal). So she is not on any medicines at all. I’m hoping we see a continued improvement in her general well being, as well as her skin settling down (possible side effect of posaconazole).

This also meant she could have her NG tube removed as it was only used to give her septrin. Having her NG tube out is a major step. She’s had one in for more than 2 years. Anna was most excited about now having a face painting butterfly done on both sides of her face now.

Before…

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And after…

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Anna’s new wheelchair

20140413-110524.jpgAnna finally has her new wheelchair. We’ve tried several times over the last year to collect it but Anna had always had either an infection or a broken bone and we’ve been unable to travel.

We went down to Cambridge on last Sunday and spent all day at Dragonmobility on Monday doing final fittings and checks.

It’s bright pink, sparkly and absolutely gorgeous!!

Thank you Dan and Lou for such an amazing chair. And thank you again to every single person who helped raise the money for this chair. The difference it has made to Anna is almost indescribable. She has mobility, independence and freedom. X

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2 special certificates

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Anna was awarded the ‘pupil of the month’ certificate at school last week.

An achievement for any pupil, but in Anna’s case also marks the fact that she has actually completed her first full month at school.

Her second special certificate was for today’s trip to theatre at sick kids. We were here for 8am to have bloods checked, assessment by doctor/anaesthetist and then under general anaesthetic by 10am. She had a lumbar puncture and chemotherapy injected into her spine and brain fluid.

This one is so special because it’s her last one. She has now officially had her last chemotherapy dose. She’s still on daily anti fungals and weekly antivirals.

We are spending all day at sick kids because after her theatre trip, she’s having her 4 hour pomidronate infusion (to strengthen her bones). She currently has no fractures and seems really well.

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2 different but both very significant events. I might have a small celebration tonight!
Well done, Anna.

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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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Final day of treatment

20140205-200118.jpgToday is officially the last day of Anna’s treatment for leukaemia.

It is two years and two months since her diagnosis. She has had oral chemotherapy for most of those 789 days, regular intravenous and brain/spinal fluid chemotherapy, lumbar punctures, daily/weekly/monthly steroids and numerous blood transfusions.

She’s had a portocath put under her skin, a feeding tube down her nose and one very unpleasant bronchial wash.

She has been on antibiotics, antivirals, antifungals, antiemetics and a cocktail of other drugs to counteract the side effects of all of the above. She has had IV fluids, electrolytes, overnight liquid feeds and saline drips.

Pain relief has ranged from calpol to morphine.

She is a frequent visitor to x-ray, and also had ultrasounds, ECGs, CT scans, MRIs and a bone density scan.

She is known to many of the departments at sick kids – neurology, endinocrology, respiratory, orthopaedic and oncology.

I’ve lost count of how many nights we’ve spent in hospital or how many outpatient appointments she’s had.

She still had some walking ability when she was diagnosed but now she isn’t able to bear any kind of weight at all. Her bones are like tissue paper and break with the slightest trauma. She has had seven fractures (femur, knees, ankles, feet, wrists). We have no idea if she will recover any strength.

She’s also had three bouts of shingles, staff epidermidis (at least twice), kiebseilla, para flu, cellulitis, mouth ulcers, UTIs, aspergillus, rsv, septic/deranged liver, various other bacterial/viral infections and an extremely severe skin reaction. And there have been a couple of times when we thought she might not make it.

Although today is a day of celebration, it’s also something of an anti-climax as her steroids were stopped some months ago due to her getting continued infections. She had her last dose of chemotherapy over a week ago as it was stopped due to her low platelets and currently we are in sick kids as she has several infections. She had a platelet transfusion this morning and needs a red blood cell transfusion tomorrow. She’s also had her monthly 4 hour pomidronate infusion today today – her bone strengthening treatment.

She was due to have her final bone marrow/lumbar puncture done today but wasn’t well enough. It will probably take place next week. She still needs to have one catch up intrathecal/general anaesthetic, likely to take place on fifth of March. We will continue to come to clinic regularly and she will be having pomidronate monthly.

However, we are glad to get to today. She is still my beautiful, gorgeous daughter and now we can start planning for the future – Anna, me and Nathan. X

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Home for 24 hours

20140204-090522.jpgAnna’s blood cultures from last Thursday showed that she had a bacterial infection – staff epidermidis. It’s a common infection, found on everybody’s skin, but only causes a problem in those people who are immunocompromised i.e. Anna. She’s had it before a couple of times.

She was put on both IV antibiotics and oral antibiotics and we were in sick kids until Sunday. She seemed well enough in herself for us to be allowed home, on the basis that we would return every morning for IV antibiotics.

We came on Monday morning for her antibiotics. Anna was on good form, although also had a cough and cold developing. She was nauseous as usual. She went to school but only managed about an hour before she started to feel unwell again. She came home, went to bed, slept all afternoon and then her temperature spiked up over 38° at about 9 o’clock in the evening.

So we headed into sick kids a&e department where Anna had bloods taken and was checked over. By midnight they decided she was probably well enough to go home but gave us the option of staying in since it was so late. Anna wanted to stay in so we are still here this morning but hopefully heading home very soon. Neither if us are feeling very pleased to be back here so soon.

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First hospital stay of the year

Anna has been really quite well since our long stay in hospital before Christmas. She’s only had one fracture (left wrist) and been generally infection free.

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However, this week she obviously wasn’t feeling quite so good. She was nauseous a lot of the time and her blood red blood cell count was low on Wednesday. I had planned to take her in on Friday morning for a blood transfusion.

However, on Thursday morning her temperature spiked up to nearly 39 degrees so she didn’t go to school. Instead we headed into edinburgh sick kids where she was admitted for further investigations. She’s had her blood taken for cultures and viral and bacterials swabs taken from mouth and nose.

She was due at the orthopaedic outpatient clinic this morning anyway, to get her current cast removed, so we headed down there, had the cast removed, and her wrist X-rayed to check if there had been a fracture (if it was fractured then we can see the healing process of the bone).

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Anna also had her blood transfusion this morning and has had more blood tests taken to check all levels. Yesterday as well as being quite anaemic, her platelets were low and her liver function tests (done as a matter of routine with Anna now) were in the higher end of normal. Not a concern yet but the trend in the past has been for them to slowly creep up out of the normal range.

Things were looking much better today. Her temperature has gone back to normal after the initial spike and she is just seems much better this afternoon. She’s had a steady stream of toys/arts and crafts from the play therapist and a session with the music therapist. We spent so much time on Ward 2 over the last two years that most of the staff know Anna really well – and she knows them too. It makes it much easier.

The doctors have said that if it were any other child they would probably have sent them home this morning with oral antibiotics. But Anna’s history of erratic and worrying medical events means that they want to keep her just a bit longer. There was talk of maybe going home over the weekend though… fingers crossed.…

Nathan has been here for the afternoon, which has been really nice for them both as often they can go several days without seeing each other, if not longer, when Anna is in hospital.

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Back home

20131207-141405.jpgAnna is back home. The newest spot didn’t develop further, all the other ones have reduced so she’s been allowed home continuing with oral rather than IV antiviral medicines.

Fingers crossed that her shingles don’t come back.

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