Journey

Rory is out!  I don’t know why we get our hopes up that Rory’s methotrexate level will be low enough for him to be discharged on Day 4.  It ever happens.  He consistently takes 5 days to clear, virtually to the hour, from the time chemo is given to when the level is low enough for hyper-hydration to stop.  Rory’s methotrexate level on Sunday (96 hours) was 0.12.  It needed to be 0.08 or less.  The target then dropped to 0.05.  On Monday morning the level was 0.09.  We all (even our nurse) spent Monday holding our breath hoping the 3pm level was low enough.  It was, just (0.06).  We have had to give Rory oral leucovorin (to protect his kidneys) every six hours since discharge.  It was Sean’s job to get up at 2am and deliver it as well as catch one litre of pee!  Rory is due back at Starship at 8am tomorrow. 

Unfortunately around midnight on Sunday Rory had an accident.  The uridome failed so I got up to remove it, change the sheets and help Rory pee.  Pee leaked onto the floor and somehow Rory slipped, falling to the ground and hitting his head on the pulldown bed.  It was scary.  The nurse spent the next hour monitoring Rory closely as his blood pressure was elevated.  Thankfully Rory was fine, but it could have been a lot worse.  For the rest of the night, what little was left, I got up to help Rory pee every 80 minutes.  By 7am Monday both of us were shattered.  Sean took over at 10.30am and they received a visit by Taryn, one of the Speech and Language Therapists at Starship.  Rory coughs a lot when swallowing fluid so they have arranged for a swallowing study to be done on Wednesday morning. 

Rory is enjoying his two nights and one day of freedom.  We have had him out in the wheelchair this morning, following the pink cycle path between the city and the motorway north and through the gardens of the Old Government House where Governor Grey lived when Auckland was the capital of New Zealand.  Colt’s homework for the day was research on the flowers he picked, Hibiscus and from the Firewheel tree. 

Thank you to Gabby’s Starlit Hope for the delicious hot cross buns and baking from Loaf Bakery.