Relishing Normal

We have been having a lovely normal week at home.  We’ve had the car serviced, been to Henry’s parent’s evening, I even managed to get my hair done.  This is excitement these days, getting to be normal.

In a couple of days we will be heading back to GOSH for the third dose of high dose methotrexate.  The last stay was a tough one, running straight on from our stay in our local hospital.  Hugo still needed antibiotics so that was an extra drug that needed to be administered at a time when we would rather have been sleeping.  I suspect other children manage to sleep through having their obs done and their drugs administered during the night, but Hugo is not one of them.  Fortunately he settles back off to sleep quickly afterwards, unless it’s 6am or later, then there’s no settling back down.  No, then it’s up to start the day and they are long days, really long days.

We structure our days around visits to the playroom, circuits around the 3 oncology wards that link together and visits from family and friends.  The highlight of our stay is the music group held on a Wednesday afternoon.  Hugo loves it.  He gets to bang a drum which must be quite therapeutic.  I’m thinking of suggesting they supply them to the parents too!

Hugo has been tolerating the methotrexate really well which is obviously great, but it means there’s no let up, no resting or down time.  It’s exhausting, but I would rather that than the alternative and my heart goes out to the parents here for extended periods of time, whose children are too poorly to leave their beds.

Hugo managed to clear the methotrexate from his system after 3 nights last time, rather than the 4 nights the first time, so I am hopeful that he will manage that again.

We are becoming experts at our packing, the journey to the hospital and the ins and outs of the hospital routine.  Although there is always something different to throw us slightly.  That’s all for another day though, for now, we are just relishing normal.