A Week in the Life

This past week has seen us back at GOSH, this time Hugo was an outpatient on Safari ward.  He was in for another bone marrow aspirate and some vincristine administered through wiggly.

Hugo was on the morning theatre list which meant being at GOSH for 8am.  So, an early start for me, Hugo and Richard and a sleepover for Henry at his aunt’s the night before (with pizza for dinner too, I definitely think Henry got the better deal!).  Hugo had to be nil by mouth for the lumber puncture which proved to be a little tricky.  Although his appetite is dropping after finishing the steroids, he still loves a bit of breakfast and going without milk is especially difficult.  In solidarity, Richard and I also go without food and drink so we are equally grumpy.

The nurse picked up a slight murmur when she listened to his chest so a heart scan was necessary before theatre.  It showed all was fine, but the process was incredibly upsetting for poor Hugo who was tired, hungry and scared.  I hated that there was nothing I could do to help him.  My soothing words and hand holding just weren’t enough and it seemed to last forever.  It also delayed our trip to theatre and we ended up racing from the cardiology ward back to Safari before theatre closed for the morning.

We are all getting used to these trips to theatre and Hugo seems to be coping with coming round from the anaesthetic better each time, or perhaps we have just got quicker at having biscuits and milk to hand to cheer him up from his post op upset.

Hugo is still managing so well with everything that is being thrown at him.  He is suffering a little with tummy ache which requires elasticated waistbands, lying on the sofa and a tummy rub.  His energy levels are slowly increasing as the steroids work their way out of his system.  He is more active and is showing signs of wanting to walk again which is great and we are trying to gently encourage without putting too much pressure on him.  We have noticed that Hugo’s hair is starting to thin.  Not hugely and not evident on his bedsheets yet, but there is definitely less of it and with a deep breath, we discussed booking him in for a haircut.

We have also had a visit to our local hospital for a pegaspargase injection.  This was our first trip back since Hugo was diagnosed.  It was a strange feeling being back.  We have come so far since that first night.  I feel removed from the events, probably because we were all in a state of shock.  The memories are like watching a TV programme, as if it all happened to someone else.  The edges are blurry, everything is lacking the clarity you would expect from your own memories, especially such recent ones.

As well as these hospital visits we had two community nurse visits for blood taking and a home visit from a member of the Paediatric Oncology Outreach Nursing team.  This team work with us to help us all lead as normal a life as possible during treatment.  She answered my long list of questions about what we could and couldn’t do with Hugo in terms of trips outside the house.  She talked about things such as work, Hugo returning to nursery and holidays once the initial phases of treatment are behind us.  At the moment the idea of nursery or holidays seem incredibly daunting and scary, but it gives us hope to know that these things are possible for people in our situation and that there is support in helping us achieve them once we feel ready.