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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One year on

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Anna’s leukaemia was diagnosed exactly one year ago.

I remember it clearly. Anna had been losing strength and mobility in her legs for a month or two. We were all puzzled as her Spinal Muscular Atrophy (diagnosed only 5 months earlier) should not have led to such a rapid deterioration. She had seemed increasingly tired and pale over a number of weeks, even months, and was complaining frequently of aching legs. All classic leukaemia symptoms, we now know. We just weren’t looking for another rare condition.

I had taken her to the doctor for a blood test earlier that day, and at teatime we got a call from him. He told us that the lab had just looked at Anna’s bloods and we were to take her straight to Edinburgh sick kids. I asked if she might become seriously ill if we didn’t hurry and he said she was already seriously ill. I also asked him if he thought we might have to stay overnight, and he said probably. Anna didn’t really leave that hospital for almost 6 weeks.

We went straight to A&E. Looking back, all the medical staff we met through the evening must have had a good idea of what we were about to be told. I think they were just checking results and getting ready to admit us to Ward 2, the oncology ward. Anna was clearly very ill by that point.

At around 11pm, Anna and I were taken up to the ward where, very gently, we were told she had leukaemia. I still get upset when I think about that night. Almost as bad as the diagnosis itself was having to phone family and friends to tell them the dreadful news.

One year on, Anna has spent around 3 months of the year as a hospital inpatient. I’ve lost count of how much time she has spent as an outpatient, or at clinic, or with the outreach team. We’ve spent Christmas on the ward, learnt about medical procedures, developed a range of new skills with ng tubes and feeding pumps and got to know the whole team who work so hard to make Anna and the other children better.

We’ve had terrifying ambulance rides, and times where we didn’t know if Anna would make it through.

Our family life has changed in ways we never imagined.

But we have also been overwhelmed by the help and support given to us. Not just friends and family, but from charities dedicated to helping people in our situation and also complete strangers. We have entered a whole new world of ill children and those who commit themselves to making life better for families in our situation. We have had to learn that it is ok to ask for help and that many people genuinely want to give it.

On a personal level, what matters to me has changed. Life is for living, enjoying and appreciating, with friends and family.We never know when it may be taken away from us or the ones we love. And I am constantly reminded that however bad things are, we are blessed to still have Anna with us. Not everyone we meet has been as fortunate.

Anna’s drug regime continues. She will still be on chemotherapy and steroids for the next year, plus antibiotics and anti fungals for even longer to protect against infections.

Tonight, Anna is probably better than she has been for many months. She goes back to nursery tomorrow. We are hoping to spend Christmas out of hospital and to lead as normal a life as possible.

As always, thank you to everyone.

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A good day for Anna

Anna slept well (apart from the usual interruptions for obs and medicines at 10pm, 2am and 6am) and was up and dressed today – the first time for a week and had a bath – again, the first time for a week (I have been washing her using a small baby bath until now). Considering how ill she was only a week ago, the transformation is remarkable. She is off her drip and only having bloods taken once a day (that apparently is a good sign – I’m still getting to grips with all the ward etiquette).

Most impressively, she has been out on the ward today and yesterday walking (with support). Over the last few months, Anna’s mobility had decreased to the point that she was no longer walking unaided at all and usually only a few steps with support. We had all been puzzled at the rapid deterioration in her mobility due to the spinal muscular atrophy (SMA). Now it seems possible that this deterioration was due to the developing leukaemia rather than the SMA itself. We, and the doctors at Sick Kids, are not aware of any other cases of SMA and leukaemia together in one individual. It would be interesting to know if there are. It also has implications for her treatment, in that some medicines could have adverse effects which would be exacerbated by her SMA.

If we are going to be on the ward for 4-6 weeks, then we might as well use the time well so we now have physiotherapists working (hopefully) daily with Anna, along with play specialists and the occupational therapist.

A HUGE thank you from all of us but especially Anna for all the gorgeous gifts that arrived today and over the weekend. Her comments on opening presents are usually something like ‘WOW – I love this!!!’ . She is a very appreciative little girl.

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