• Hugo’s Story

    What is maintenance all about?

    We have now reached the end of our first 12 week cycle of the maintenance phase.  We are slowly adjusting to another new normal, one that will last a long time. So what is maintenance?  As I understand it, during…

  • Hugo’s Story

    A Mini Holiday

    Our first mini holiday.  3 nights in the Cotswolds.  Our first chance since Hugo’s diagnosis nearly 9 months ago to get away.  An opportunity to forget everything else that is going on, to relax, have fun and be together.  Most…

  • Hugo’s Story

    Reaching Maintenance – Yay!

    Today saw us back at GOSH for a second attempt at starting maintenance.  Hugo’s rosy cheeks had gone and his bloods were up a little, so we were hopeful that this time would be more successful. It was good news,…

  • Hugo’s Story

    False Start

    So today we set off to GOSH for the start of the maintenance phase. Hugo’s bloods were taken on Friday and they were still a little low, but we’d checked with GOSH and they were confident they would increase enough…