Journey

Rory is feeling a little bit rubbish.  He was re-admitted to 27b last night and put on fluids and medication ready for the fourth chemotherapy treatment (Doxorubicin and Cisplatin) which begins this morning.  It was up and down all night with the pee bottles.  Rory has been subject to a few tests over the last couple of days.  He must feel like a lab rat.  The GFR test of his kidney function, which required injecting him with purple radioactive material, showed his function has declined a little but it is still safe to proceed with chemo today.  His left cochlear implant was re-tested.  The impedance has gone but he is still not hearing as well with his left ear as he was in July.  The Dermatologist examined his skin rash yesterday.  She took a swab and a biopsy.  This involved a local anaesthetic and taking a skin sample with something that resembled a single hole punch.  He has one stitch in his right arm to seal it.  He has a form of Foliculitis but they do not know the cause.  As he will be neutropenic next week it is important to make sure it won’t lead to a serious infection.

Two nights at RM House doesn’t seem anywhere enough but it was wonderful all the same.  We managed to escape for a couple of walks to Hobson Coastal walkway and Te Henga Bethells Beach.  It is challenging both because of the limitations of the wheelchair, the condition of the paths and Rory’s height and weight.  We have been investigating better options for getting him out into the wild but the price of off-road wheelchairs/adult sized mountain buggies is staggering (upwards of $8,000) because they all imported.  In an outdoors country like Aotearoa you would think there would be locally made affordable options for kiwi families.  We know how important being outdoors is to our physical, mental and emotional health. 

Thank you Relwyn Brimelow for the lovely hand knitted wool socks for Rory and myself.