Roar!

Hugo and I are currently at GOSH for his last high dose of methotrexate.  We are on Lion ward this time, rather than Giraffe ward as usual.  The nurses on Lion ward are of course lovely too, but I am a little sad we don’t get to finish our time here on our usual and familiar ward.  We are not Lions, we are Giraffes!  Of course there is plenty of time to visit the Giraffe nurses as we try to fill our days here.

As I write Hugo is sound asleep in his hospital bed.  I love watching him sleep, so beautiful and peaceful and a million miles away from all the difficulties he faces in the awake world.  He’s had a tough day, my little man.  It was lumber puncture day and he, as usual, had a tough time with the gas. But today was particularly bad. He was inconsolable after waking up, he kept holding his head saying it hurt and gagging as if he needed to be sick.

There are many risks associated with the lumber puncture procedure, they are rare, but they happen.  We sign a consent form before each one agreeing that we have been informed and are aware of these risks.  We have probably become quite blasé over time, in all honesty I barely read the form now.  The words are no less scary each time, but with the familiarity and repetitiveness comes complacency.  As I write that it sounds ridiculous.  How can it be that something so serious is now treated with complacency?  But it is.  In our new normal, that is just how it is.

But today those risks were brought to the forefront of my mind.  I was worried and scared that Hugo was having some kind of reaction, that something serious was wrong.  Even back on the ward Hugo was upset and wasn’t his usual self.  I knew something was wrong, I just didn’t know what.  Finally an attempt to give him a dose of Calpol brought up the phlegm and mucous that must have been sitting in his throat bothering him and I breathed a sigh of relief as he cheered up and started his usual post op demands for food.  He was fine, it was nothing serious, but it highlighted again the potential dangers that are there, the risks our little man faces on an almost daily basis.

Half term superhero fun!

The last week has been a mixed week.  It was half term so Henry was off school.  Richard took a couple of days off and we had some lovely family time together.  It was also our 10 year wedding anniversary and we managed to sneak out for a lovely meal to celebrate.  Without children and with champagne!

However, I have also been feeling a little down.  I wonder if the lack of structure the school holidays bring has caused me to feel a bit lost.  Maybe it’s because this is our last stay at GOSH.  We will be back to the out patient ward, but this is the last time we will be here on the ward and as strange as that sounds, I think I’m going to miss it.  These stays are difficult.  We have disturbed sleep, the days are long and as Henry puts it ‘our family has to be split in two’.  But it is also comforting and reassuring to be around other parents who know what we are going through and nurses who are there 24 hours a day to answer any questions we have and calm our worries and fears.

I’m sure once we are home again I won’t miss these stays and will instead enjoy us all being together, trying to figure out our new normal lives.  I will be thankful that so far our time in hospital has been limited.  A good nights sleep will help to cheer me up and I will again find a way through the fog.  For now, we will draw strength and try to roar like the lions we currently are for the remainder of our stay.