A Mini Break

We have just experienced our first unscheduled hospital stay.  I suppose this is what we have been waiting for ever since we came home.  I suspect we are lucky to have made it this long.

Infections are a very serious risk to leukaemia patients and when we left GOSH that first time 6 weeks ago we left armed with the blue folder (I spoke about it here).  The blue folder is our handbook on all things childhood leukaemia related.

Armed with that overwhelming amount of information we spent our first few days at home on edge, waiting for him to become unwell, to spike a fever.  We were constantly poised, ready to dash him to hospital in the middle of the night.

But it didn't happen.  We remained alert, checking his temperature at any sign of a slightly rosy cheek or a sniffly nose, but our boy remained well.

Then along came a graze.  A small graze on the inside of his left foot.

After it stubbornly refused to show any signs of clearing up for 10 days, we diligently followed the advice in the blue folder and called our local hospital.

What followed was 3 nurse visits to our home to assess the wound and take bloods, an afternoon at our local hospital for more bloods and more assessing, relief as we escaped with oral antibiotics, short lived relief as test results showed an infection (possibly the graze, possibly something else, possibly a contaminated blood sample), admission to hospital, IV antibiotics and a 5 night hospital stay.

Having fun with a
visiting Henry
We were discharged just in time to be admitted to GOSH for round 2 of high dose methotrexate.

Fortunately Hugo remained well during our mini break, but it has been a bit of a wake up call and given us some idea of the havoc leukaemia can play on our ability to live an ordinary life.  It's been a test on our emotions, on my ability, or rather inability, to survive on limited sleep, on how quickly we can organise ourselves, arrange childcare and such like.

We were lucky this time, it turned out to be nothing serious, but the seriousness with which the graze and blood test results were taken, bring home yet again that Hugo isn't an ordinary 2 year old.  Little scratches, grazes or a slight peakiness can't just be brushed to one side.  We have to be constantly vigilant because the consequences of not taking something seriously enough, or not acting quickly enough can be severe.  We have to balance our lives between allowing him his freedom, of not wrapping him up in cotton wool, yet remain aware of his differences, of the limitations this condition puts upon him and and us.

I suspect this won't be our last unscheduled stay and an overnight bag is now packed and ready to go, just in case.


  1. Goodness, this really puts into perspective how careful and vigilant you have to be - I had no idea a tiny graze could be such a big deal. But then, I have no idea about anything much to do with leukaemia and reading your blog is such an eye opener for me. I'm so glad you're sharing all of this, although of course I wish you weren't in a position to do so. Much love to you all xx

  2. We had no idea either! It's certainly been a steep learning curve. Thank you for your kind comments. Much love back to all of you xxx