Journey

Being active in the outdoors is at the heart of our family.  We are at equilibrium, and our happiest, in the beautiful wild areas of Aotearoa.  We have raised our boys to walk, tramp, hunt and volunteer for conservation.  As a six year old Rory would go all day and even mountain biked 14km through Mataraua and Waima Forests along the rugged Waoku Coach Road.  Following treatment for medulloblastoma he could barely walk but we re-built his fitness over several years so he could return to the outdoors, albeit clumsily.  At an indeterminate point in time the decline in his mobility began, initially so subtle we thought we were imagining it.  He had reduced control of his legs, started stumbling and tired more easily.  We cut the distance and for a short period Rory used a pole.  However, this wasn’t very successful as it was another thing he had to control.  Sean and I took turns providing alongside support, again cutting the distance and only traversing easier tracks.  After treatment for osteosarcoma Rory again could barely walk so we pushed him in the Hippocampe (giant mountain buggy).  As he re-built his fitness it was clear Rory wouldn’t walk unaided again, he needed the frame support provided by a rollator.  Rory has been in remission from osteosarcoma for three years.  He is teetering on the cusp of no longer be able to use the rollator as an effective mobility tool.  He has such poor control of his feet and legs it is using all his energy to move forward.  As a result he is incredibly slow, is drained and at constant risk of falling.  A power chair is in his future.  This week we had a visit from OT Coralie who brought two power chairs for Rory to try.  Tears came to my eyes when I saw him sit in the chair.  I said to Coralie “I can’t believe this is going to be his prison”.  She told me not to think about it like that.  She said the powerchair will give Rory independence and freedom in the community.  She also said the transition period from mobile to immobile is challenging and upsetting.  Rory will need targeted exercises to keep his leg muscles strong and functional when he is no longer walking.  It makes me angry, and sick to the pit of my stomach, for cancer to continue to rob him.  His mobility issues are the result of intracranial calcification from the high dose radiotherapy he received to save his life.  There is no known treatment or cure and it is progressive.  We are fortunate we have ACC support to help us give Rory the best quality of life possible. 

It has been school holidays so classes at WITT were suspended .  Rory and Tash enjoyed watching Indiana Jones at the movies.  Rory is a huge fan.  He has watched the four existing films multiple times.  The first one was released in 1981, 21 years before he was born!  When we visited Universal Studios, Florida for his wish trip we bought him an Indiana Jones costume, complete with whip.  I took some leave and we spent a few days staying with Grannie and Grandad Gardiner in Dannevirke.  The highlights of our short break were; Whanganui Brick (Lego) show, National Aquarium and Ocean Spa (sitting in 40 degree outdoor pools in the rain) in Napier and the walk to the Castlepoint Lighthouse.  The weather was stormy and we arrived half an hour before high tide so the ocean and lagoon were simultaneously breaking waves onto the access sand bar.  Sean, Colt and I barefoot, in raincoats with pants rolled up had to swiftly cross.  Unfortunately we had to leave Rory in the vehicle as it wasn’t safe for him because of his limited mobility.  It just isn’t fair Rory has to increasingly miss out on the experiences we value as a family. 

A letter arrived from Dr Stephen, who has been Rory’s Oncologist for 14 years, discharging him from Starship Hospital.  It marked the end of a long period of Rory’s journey.  It made me feel sad and a little apprehensive.  Rory’s primary medical team will be our GP Dr Morrison and Dr Sharma at Taranaki Base Hospital.  Rory’s medical files are inches thick and he has a complicated history.  It will continue to fall to me to be on point for his care.