anna's blog

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

5 years on

My beautiful, gorgeous girl is now 8 yrs old. 5 years ago today she was diagnosed with Childhood acute lymphoblastic leukemia. After 2 years of intensive treatment  she remains in remission.

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Our lives had already been changed forever with the diagnosis of Spinal Muscular atrophy only a few months before the leukaemia diagnosis, but now we are through the intense and traumatic period of critical illness we focus on allowing Anna to be the best she can both now and in the future. She is just like many other 8 yr old girls. She loves arts and crafts, singing dancing and (still) loves anything pink and sparkly. She has a full and busy life with school, after school activities, play dates and holidays. She expects to be able to do everything and that’s what we try and make happen. However we face challenges on a daily basis in terms of the level of care and support needed as well as ensuring accessibility in its broadest sense as we go about our lives. Anna still doesn’t sleep through the night, needing help to turn over or move her covers, which means I live in a state of constant exhaustion. She remains under the care of 6 consultants across 3 hospitals and 2 countries. She needs help with every single aspect of her life both day and night.

I’ve struggled to blog in the last year or two (mostly because I’m just so tired all the time)  but I know there are lots of you who want to know how Anna is doing. We still have a story to tell – not so much now about leukaemia but more about how we deal with disability and ensure accessibility in every aspect of Anna’s life. I’m going to do my very best to continue the blog to tell you that story.

It’s probably clear to even those who don’t know Anna personally that she is a strong willed, assertive and (at times) confident young girl. She places no restrictions on herself and expects the same from  others. I am very lucky to have her. x

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A busy day

We were at sick kids today (Royal Hospital for Sick Kids) Edinburgh in the planned investigations unit to check Anna’s hormone levels. Since finishing her leukaemia treatment almost 2 years ago, Anna has been catching up on her growth. However it seems she might be growing a bit too fast and so today she is having some hormone tests and an xray. Her gripper is in to take bloods and give her some medication. She’s up on the ward and should be finished and back to school in time for lunch. She is thrilled that the play specialist is with her in the playroom.

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And especially delighted to get a certificate, medal and gift from the fairy box to take home. 

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After all that she made her promise at brownie’s tonight. She is a busy girl!

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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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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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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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