Journey

Rory has had intermittent back pain for a month.  It is centred on his lower spine.  He struggles to bend and grunts with the effort and pain.  He has seen the Orthopaedic surgeon and an MRI is scheduled for Monday.  Sean and I are forcing down fear and anxiety.  Rory received radiation to the spine in 2009.  Medulloblastoma cancer cells travel in CSF (cerebral spinal fluid) inside the spinal cord.  His spine was radiated to kill any cells present.  The long-term impact of radiation on Rory’s system has been devastating.  It has caused almost all his significant impairments.  It caused the secondary cancer osteosarcoma in his jaw.  Our greatest fear is another tumor could have grown in his spine.  Even though my cousin Jason, who is a nurse, tells me not to use Dr Google I do.  I’m not sure if what I read terrifies me more, or reassures me as there are many other faults which could be the cause.

In spite of the pain Rory carries on, spending a large proportion of his week with Support Carer Shaun (it can be confusing having two Sean/Shaun’s about).  Rory had a CT scan of his chest, neck, and jaw as part of monitoring for reoccurrence of osteosarcoma.  We are awaiting the result.  A blood test prior to his latest testosterone injection, when it should be at its lowest (trough), came back high.  We now need to extend the gap between injections.

Sean and I slipped away for half a day to explore South Taranaki with Colt and Arana.  Until we sort a powered mobility device for the outdoors unfortunately Rory remains confined to urban areas so we have to leave him behind.  His declining balance and mobility makes it impossible to navigate the wild and at times it is like we have accepted this.  Then a Facebook memory appears reminding us how much he loved being in the outdoors, exercising, exploring, being on the beach or surrounded by the green.  It strengths our resolve not to accept his current situation but endeavour to reconnect him to a fundamental part of his existence and that of our family.