Journey

We are relieved to have made it home.  Although I said to Sean last night there doesn’t seem to be much point unpacking our bags when I have to re-pack them next Saturday.

Rory’s blood sample at 6am Saturday was 0.08, which was what I expected, so hyperhydration continued.  Sean swapped with me at 11am.  As only one parent is allowed in Starship at a time, and Colt is not allowed in at all, we take turns on 24 hour shifts.  Rory had another blood test at 2pm and his methotrexate level had only dropped a fraction to 0.07.  Thankfully Dr Stephen was on duty.  He was willing to discharge Rory provided he drank plenty of fluids.  We had to give him oral leucovorin to protect his kidneys every six hours for the next 24 hours.  We drove home yesterday.  The road was a lot busier under Level 2 than it has been under Levels 3 and 4. 

The first three days of Rory’s methotrexate dose were hard going last week.  I wasn’t sure any of us were willing to carry on.  On Wednesday while Rory was asleep I sat in his ward room and put together a summary of what he has been through over the last eight months of treatment.  I felt it was important to look back at how far we had come to try and drive us the final steps forward.  The presentation is at the blue button on the top of the home page of Rory’s website “Click below to read Rory’s treatment journey with osteosarcoma to date”.  The summary shows the enormity of what Rory has endured but it is hard to describe with words how it has felt and continues to feel.  Today’s blog is dedicated to Nurse Specialist Tracey who has been with us every step of the way.  She never complains about my requests and laughs at my jokes even when Rory thinks they aren’t funny.