Lisa G.
Posted by

Watching and Waiting

Lisa G.
Posted by
09 Jul 2017

After many months being admission free, it finally caught up with us. An account of Hugo's recent hospital admission.

When Hugo started the maintenance phase of treatment 14 months ago, we were warned that there would be hospital admissions.  That Hugo's low immunity would make him susceptible to infections and that his inability to fight these infections would likely mean IV antibiotics administered in hospital.  It wasn't a case of if, but of when. 

We were prepared.  A bag always packed ready to go, never too far from the hospital, our working life structured so someone was always close to Hugo, just in case.  We kept a close eye on him for any signs of infection.  We watched and we waited.

We realised how fortunate we were, amazed even at Hugo's resilience.  As time passed, we become aware of how many admissions other children in Hugo's situation experienced. How very serious these infections could be for children with leukaemia.  We felt lucky, but it also felt like there was a black cloud hanging over us.  Watching, waiting.

On occasions I worried over his lack of infections.  Was the chemotherapy doing what it should be?  Was it normal?  How will his body learn to fight if it doesn't get tested?

There had been plenty of trips to hospital for scheduled appointments and many other unplanned visits for various issues that cropped up during that time, but we always managed to escape on a watch and wait basis or with oral antibiotics.

Until now.

A chest infection resulted in a 4 night stay in hospital.  We watched as his temperature refused to come down, the sickness and the upset stomach.  How he could barely keep his eyes open or eat anything.  We waited for the antibiotics to work, for him to turn a corner.  Until finally, we breathed a sigh of relief as he gradually started to improve.

Having avoided a hospital admission for so long, this one was a bit of a shock to the system.  Seeing Hugo so poorly was a stark reminder just how seriously ill he is and how fragile his grasp on normally is.

It has also shown us, yet again, how much love and support we have and how much this kindness means to us.  Hospitals are a place of worry, of boredom, of sleep deprivation.  A few days seems like weeks away from the outside world, a black hole of time and normality.  The support from the outside world makes these days just that little bit more bearable.

We have now been home for two weeks and the weak and wobbly Hugo who we brought home from hospital is slowly bouncing back.  The cough and temperature have gone, his appetite is very slowly increasing, along with his energy levels.  

The bag has been re-packed.  We continue to keep a close eye on him.  There is a renewed affection and appreciation for our strange new normal life.  The black cloud lingers, but we continue on, one day at a time, feeling thankful.   

And we watch and we wait.

5 June 2017

To read more on Hugo's journey, go to



Lisa, you really show in your blog how your life is structured on high alert around Hugo and what his needs might be. That packed suitcase is really symbolic. Take lots of care of yourselves. Hugo is a little fighter and keep blogging.

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