Journey

Rory still has pain and stiffness in his ankle after the fall in Whanganui.  This means he is incredibly slow moving and in a reasonable level of discomfort.  If it continues to be a problem we may need to take him for an x-ray or scan.  We have been looking at options to keep Rory active in the community into the future.  When old Facebook posts of our adventures pre his second cancer diagnosis appear in our feed they are a sharp heart breaking reminder of how much mobility Rory has lost in only a handful of years.  On our radar at present is the Omeo  https://omeotechnology.com/  We are hoping to trial this when the company comes to Taranaki in the next couple of months.  This week Rory had his first volunteering session at Salvation Army Op shop and it went well.  He is keen to return and it gives him something else to fill in his day.  We met with potential Support Carer Mark.  He seems nice.  Hearing about what Rory has been through and his impairments is pretty confronting for new people.  I had a phone call with ACC Case worker Jes.  Over a month had passed since our last catch up so it was good to discuss the things on my long list.  The results are back from Rory’s adult Growth Hormone test prior to Christmas.  It is no surprise he is deficient.  The results of genetic testing for tumor disposition genes has been located and Rory is negative.  Combined these results clear the way for Rory to start a maintenance dose of adult growth hormone.  However, the Endocrinologist has reservations about Rory taking this medication as they cannot say with 100% certainty it will not cause any remaining cancer cells to grow, although the likelihood is incredibly small.  We are going to trial the medication for a month to see if it increases Rory’s quality of life i.e. energy level.  Rory will need a clinic appointment with the Endocrinologist as she will need to adjustments his other medication.  In anticipation of Cyclone Gabriel, Colt, his friend Reid and I snuck out this morning to stretch our legs on Taranaki Maunga.  I was a bit nervous about the wind speed at the higher altitude so we started early.  It was reasonably sheltered and the boys moved along at a decent pace chattering the whole time.  I followed in the back emersed in swishing golden tussock heavy with seed heads.  When we got to a warning sign Reid pipes up and says “Warning Dangerous Dudes”, as they both approach their teenage years I don’t doubt it.