• 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

    For my Mum

    Dear Mum It has been two years since you passed away.  I can hardly believe that so much time has gone by, that our lives have somehow managed to continue without you here.  You have missed so much and time…

  • 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…

  • Hugo’s Story

    Bye Bye Delayed Intensification

    Delayed Intensification, phase 4, is over, woo hoo! Unsurprisingly, Hugo and his daddy managed just fine with the blood transfusion. The colour is slowly returning to his cheeks and his energy levels that were so zapped during phase 4 are…

  • Hugo’s Story

    A New Kind of Strength

    So, as predicted, Hugo needs a blood transfusion.  He’s done well to get through Christmas and into the new year, but his luck has run out and it’s a visit to our local hospital for him today.  Henry has a…

  • Hugo’s Story

    Restoring a Little Balance

    Welcome to 2016!  Well we nearly welcomed in the new year from a hospital bed – another narrow escape.  Hugo’s temperature went up during the early evening.  It wasn’t quite high enough for immediate action so we kept an eye…

  • Hugo’s Story

    So this is Christmas

    It was a close call, the week leading up to Christmas had seen 4 hospital visits, only one of which had been scheduled, but we made it through Christmas with no hospital stays, yay! Hugo’s wiggly managed to work for…

  • Hugo’s Story

    Phase 4 Part 2

    So we are now in the second part of phase 4.  Along with the cyclophosphamide, Friday’s visit to GOSH saw us restarting the dreaded mecaptopurine.  Another 2 weeks of the yucky, nil by mouth chemo that Hugo really dislikes. In…

  • Hugo’s Story

    He’s Back!

    Hugo is back!  After a week or so of being completely wiped out, he has turned a corner. Somehow he has summoned some energy and is seeming much more like his normal self again, minus the hair.  It’s a huge…