What is maintenance all about?

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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.

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A Mini Holiday

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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 importantly, a chance to be a normal family, doing normal family things.

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For my Mum

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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 has not lessened our sadness or the huge gap you have left in our lives.

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Reaching Maintenance - Yay!

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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.

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False Start

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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 over the weekend to allow us to start maintenance today.

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Bye Bye Delayed Intensification

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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 on the up again.

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A New Kind of Strength

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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 trip for his birthday to see the musical The Lion King and I am the lucky one taking him, which means Richard is on hospital duty.

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