Roar!
Labels:
acute lymphoblastic leukaemia,
childhood cancer,
GOSH,
Great Ormond Street Hospital,
lumber puncture,
methotrexate
·
Posted by
Lisa Griffiths
at
16:28
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! |
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.
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Sending biggest hugs, lovely. You all have so much to adapt to in this new world and are all doing a brilliant job... give yourselves some credit and most definitely a break xx
ReplyDeleteThank you lovely lady. Those hug are much appreciated xxx
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