• Hugo’s Story

    The Guilt and the Fog

    Today I went for a haircut.  It’s my brother’s wedding in 3 weeks and I’m very much hoping to make it.  I wanted to hide the grey, of which I’m sure there is more of since this journey began.  I…

  • Hugo’s Story

    A Week in the Life

    This past week has seen us back at GOSH, this time Hugo was an outpatient on Safari ward.  He was in for another bone marrow aspirate and some vincristine administered through wiggly. Hugo was on the morning theatre list which…

  • Hugo’s Story

    What If?

    The weather has been warm and the boys had a great time out in the garden this weekend.  Henry in the paddling pool and a still non-walking Hugo sitting in a garden chair playing with toys. Bubble fun in the…

  • Hugo’s Story

    The New Normal

    We are slowly setting into life back at home, our new normal.  Things feel incredibly different and the 15 days we were away for don’t seem a fair reflection of the journey we have been on. It’s strange being out…

  • Hugo’s Story

    Home Sweet Home

    Our stay at GOSH has lasted 2 weeks, but finally, 15 days post diagnosis and 11 days into treatment, we are allowed home. We prepare to leave armed with a large bag of medication, with numerous leaflets and booklets.  We…

  • Hugo’s Story

    Freedom!

    Freedom! Well almost. Perhaps a small step towards freedom is a more accurate description. Today we have been allowed outside.  After a blood transfusion yesterday, Hugo was taken off fluids so is no longer hooked up to a drip, there…

  • Hugo’s Story

    Teardrops

    Since diagnosis, 7 days ago, I have had to hold Hugo as he cried while numerous medical staff tried time and time again to insert fresh cannulas into his small hands.  Telling him it will be okay, when it was…

  • Hugo’s Story

    Phase 1 – Induction

    It has been 4 days since Hugo was diagnosed.  We spent the first night at our local hospital and were then transferred by ambulance to Great Ormond Street Hospital (GOSH).  The last 4 days have been a whirlwind, an intense…

  • Hugo’s Story

    The Moment

    This is not how I imagined it.  Not that I’d given a great deal of thought to it you understand.  But, I’m not alone am I?  In letting my mind slip, my imagination take hold and to wonder ‘what if’?…