anna's blog

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

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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2 year anniversary

At almost exactly this time two years ago on 5 dec, Anna and I were taken into a small hospital cubicle on ward 2, Royal Hospital for sick children, Edinburgh – the cubicle that was to become our home for the next six weeks – and very gently told that Anna had leukaemia.

Our lives have changed completely in that time.

Anna is still with us, although she is in hospital tonight, and has successfully fought numerous life-threatening infections in the last two years.

I am so grateful. Thank you for your prayers.

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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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