Watching and Waiting

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.


  1. Glad to hear Hugo is doing better. My little girl is going through interim maintenance just now and earlier tonight was admitted to hospital having had a temperature this afternoon (although no antibiotics yet). This is our first return to the ward after two months away and like yourselves we had been awaiting the time when we would have to go in and kept expecting it to happen. Need to wait and see how things go but I just wanted to comment and thank you for sharing your experiences as it has been helpful to dip in and reflect on what we have been through so far and what we have still to experience as she bravely fights on (as Hugo does too). Stephen

    1. Thank you so much for your kind comment. I hope your daughter isn't in hospital for long. We had quite a few trips and stays during IM and DI, those first 4 phases are particularly tough going. I think it's easy to underestimate how emotionally draining the uncertainty is, for the whole family. I hope that, like us, maintenance is (relatively) kind to you. Best wishes to your daughter. Lisa