Raising the Bar

Today sees the end of phase 3.  Another one down, go Hugo!

I gave Hugo his last dose of mecaptopurine earlier this week.  He will have to resume taking it in a few weeks, but for the moment it’s off the drugs menu.  I did a little celebratory dance and song, although I’m not sure Hugo was too impressed.  It has been so good to be able to get him up from his naps without the syringe of doom in my hand.  No tears, no struggle, just happy Hugo. We can now eat whenever we like, unrestricted by Hugo’s ‘non eating time’, which I know Henry in particular will be pleased about.  Hugo and I used the occasion to have a biscuit – any excuse!

We now have a few days off before starting phase 4.  Hugo’s appetite has increased and it’s lovely to see him eating a bit more.  He remains well and happy which is amazing.  He is amazing.

It’s a big relief that he has come through another intense phase of treatment relatively unscathed.  The hospital stays of this phase were difficult and disruptive for all of us.  There has been a cumulative effect for me with regards to disturbed nights every other week, and the last stay left me shattered and emotionally drained.  But, we also appreciate how fortunate we have been.  Things could have been so much worse, the challenges we faced could have been so much tougher.

The lines of what we now consider to be ok have shifted and blurred.  Things that would have seemed daunting and scary in our old life now seem normal.  We no longer sweat the small stuff, well not as much anyway. The bar that measures what is acceptable and manageable for us has risen to a new level.  Above that bar is the truly terrifying.  The things we’d never even had to imagine before, in our old life.  We try not to dwell on it.  We try and keep our focus below the bar, on where we are now.  We march on, one day at a time, thankful that for now the bar is set at a level we can manage.