False Start

So today we set off to GOSH for the start of the maintenance phase.

Hugo’s bloods were taken on Friday and they were still a little low, but we’d checked with GOSH and they were confident they would increase enough over the weekend to allow us to start maintenance today.

So this was it.  We were starting the final phase.  The point we had been heading for since diagnosis.  The light at the end of a long, dark tunnel.  A chance for our lives to get closer to normal, for things to be easier, less arduous for Hugo, more predictable for all of us.  We set off with a mixture of excitement and apprehension, but keen to get started……or so we thought.

Hugo’s cheeks were a little rosy.  They resembled what I refer to as ‘nap cheeks’.  Red and warm as if he’d woken up from a nap, except he hadn’t.  The doctor wasn’t overly concerned.  He was well in every other respect and there was no sign of the rosy rash anywhere else on his body.  However, they checked his bloods to ensure they has risen the required amount as expected, and instead of rising they had actually dropped.  The rosy cheeks combined with the dropped blood count led the doctor to believe he might have a virus.

It was explained to us that Hugo should be in the best possible health before starting maintenance.  That starting maintenance at the same time as fighting a virus was not a good idea.  Therefore maintenance would be delayed for a week until he was over any virus and his bloods had risen.  We were told to cease the one drug that he was currently taking in order to give his bloods the best chance to pick up.

No maintenance for us today then.  In all honesty I didn’t mind at all.  I wasn’t frustrated by the wasted hours or the delay in reaching that light.  I suspect the apprehensive part of me was a little relieved.  Another week free from drugs for Hugo, giving him the chance to build up his strength further.  A little bit longer before having to face the reality of whatever maintenance is going to bring.

Hugo is quite happy coming to hospital, in fact I think he quite enjoys it.  A little trip out of the house with mummy and daddy.  He gets made a fuss of by the doctors and nurses and there’s a fun playroom.  He doesn’t understand it any further than that and if he’s happy, I’m happy.  So, the thought of another trip, same time, same place next week is fine by us, that light is worth the wait.