Restoring a Little Balance

Welcome to 2016!  Well we nearly welcomed in the new year from a hospital bed – another narrow escape.  Hugo’s temperature went up during the early evening.  It wasn’t quite high enough for immediate action so we kept an eye on it with crossed fingers.  It fluctuated for a couple of hours before coming down and staying down, much to our relief.  We felt very fortunate to have avoided a hospital stay again and it was lovely to have both boys tucked up in their own beds as we saw in the new year, albeit with no fizz – just in case a hospital dash became necessary.

Hugo is currently having the second batch of cytarabine doses each day, with the last of the 4 doses tomorrow.  Along with the temperature, he has also been sick a few times and is completely off his food again.  His bloods are still low and we have been warned that a blood transfusion is very likely.  This is the final tough slog before getting to maintenance.  It’s difficult, but there is a light at the end of the tunnel to help keep us going.  Hugo is dealing with it all amazingly well, as per usual.  With Henry off school and Richard off work, we have been enjoying lazy family days snuggled up in the warm getting lots of rest.

The start of this new year feels a little strange.  I’ve always enjoyed entering a new year.  I like the feeling of starting something fresh and new with renewed enthusiasm.  I really enjoy looking forward and making plans and a new year is the perfect excuse to do exactly that.

However this year is different.  We are entering our first full cancer year.  We have a whole year of treatment stretching out before us, consuming our entire year.  Filling it with fear and worry and hospital visits.  With medication and its side effects and the unknown.  His leukaemia is going to be here, affecting all our plans and all our lives for the whole of this year, and the next year for that matter.  It’s hard not to become overwhelmed by the hugeness of it, to not feel disappointed for Hugo, for all of us.  It’s impossible not to be aware of the difference between where we find ourselves and where we thought we would be.

But, I’m trying my best not to let it dim my enthusiasm, I’m trying to concentrate on the positives, because there are many.  There is maintenance to focus on and the hope that it will help our lives get a little closer to normal.  We can still make plans and look forward to things, we just need to alter our expectations and be prepared for the unexpected.

I have had a glimpse into the darkness, of the worst that can happen and I am going to use that fear to fuel my enthusiasm.  I am determined to cherish every moment, to create wonderful memories and to get out there and live life as best we can.  We have so much to be grateful for, so much to appreciate.  The boys deserve some fun and they deserve to be spoilt.  I can’t make up for all Hugo is going through, but I’m going to try my very hardest to restore a little balance.

So there will be a holiday and fun family days full of smiles and laughter (and probably two boys bickering!).  I have no doubt there will be tough days, but I am going to make sure there are plenty of fantastic ones too.  If nothing else, I am going to get my little superhero to Peppa Pig World!