anna's blog

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

Some smiles

Anna has been much, much better today.

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She is allowed out of isolation so we’ve been to the shop and chosen a magazine and even been out of the hospital to get a chocolate muffin from the deli.

Tuesday’s X-ray suggests her fracture is healing well.

There has been no vomiting, plenty poos and lots of eating and drinking.

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All the swabs, infection screenings, blood tests and urine/bowel samples have revealed no infection. There is still no real idea of what has been wrong – most likely an unidentified bug – but there is an underlying concern about the similarity of her symptoms to previous significant episodes (that seems to be the medical term for terrifying, life threatening incidents, of which we’ve had a few), in particular the low blood sugar level. So Anna will be referred to the metabolic team. I think she has already been discussed within the endocrinology team. I don’t think there can be many teams at edinburgh royal hospital for sick children who haven’t seen or discussed Anna. Certainly she is known to neurology, oncology, orthopaedics, respiratory, endocrinology and metabolics.

Tonight, she has had a lovely bubble bath and is sleeping soundly.

Despite trying hard not to, she smiled several times today.

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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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