Journey

Rory has been in remission from Medulloblastoma (brain cancer) for 13 years and Osteosarcoma (bone cancer) for nearly three.  We have worked hard on his rehabilitation and to develop a new normal.  While his balance and mobility continues to deteriorate most other things appear to have stabilised.  There is less to tell in a weekly blog and less time to tell it in now I am working full-time.  I have decided to stretch my blogs to once per fortnight rather than every week. 

It has been a busy fortnight.  Rory has been to his happy places.  The first is NP Men’s Shed where he is making transport boxes for young Kiwi-Nui, Western brown kiwi, who will be released into new sites with predator control in Taranaki.  He and Peter are also working on a project for TRC, a trophy using a decommissioned hand grenade for one of our long serving Scientists who passed away last year.  His second happy place is Doggy Day Care where doggy love is wonderful therapy.  The third is the Skills for Living course at WITT where Rory gets to socialise with other young people like him.  Deanne took Rory out one evening to The Junction volunteer dinner.  In the weekend he spent a day with Jo while Sean, Colt and I escaped to a bush block in the SE hill country to retrieve recorders put out to detect the presence of Kiwi-Nui. 

This week Rory started on a maintenance dose of adult growth hormone.  This is given daily with an injector pen.  He has been started on a low dose which will increase with time.  Hopefully it will result in improved energy so he can be at his best during the day.  We attended a Zoom training session on how to use the pen.  Rory attended a session with Psychologist Daniel and had a dental check up at the hospital.  He needs to go back as one tooth has a hole which needs to be filled.  All Rory’s dental work has to be done at the hospital due to the risk of complications.  ACC OT Coralie, accompanied by a wheelchair rep, came to our house to trial a manual wheel chair which had power added.  Rory drove it inside and outside and I practiced getting it in and out of our car.  It was heavy and bulky to lift and not easy to take apart, and put back together quickly.  We also have to consider things like foot clearance, arm support and the robustness of the wheels for mobility in the community. 

Colt completed his week at home for Covid19 isolation.  Thankfully no one else caught the virus.  However Colt developed tonsilitis and is now taking antibiotics.  He was poorly and miserable with a painful throat when I was called to pick him up from school on Thursday.  On Friday morning he awoke upset saying he had experienced a bad dream in which we all caught cancer and died.  He has never said anything about harbouring fear like this.  As we create a new normal it is easy to overlook the subtle mental and emotional impacts of cancer on Sam and Colt.