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…
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…
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…
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…
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…
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’?…