Journey

One of Rory’s teachers, the lovely Wendy, has been working on her Masters thesis this year through the University of Waikato.  The topic of her research was supporting effective transition back to school for children with cancer; a student and professional perspective.  Wendy was Rory’s teacher when he resumed primary school after treatment for brain cancer.  Rory had been severely affected by cancer and its treatment and Wendy had little guidance or support in how to transition him back to school.  She and I worked together, in small steps, through trial and error.  It was hard work with some heart wrenching moments.  This year Wendy has spoken to other cancer kids and their families who have found it equally challenging, bewildering and frightening.  Wendy rang me this week as there has been a lot of interest in her thesis and she needed to find a photo which captured cancer kids when they turn up at the class room door.  She suggested the Beads of Courage https://childcancer.org.nz/support-for-families/beads-of-courage/ as they are symbolic of the journey the children have been on and what they carry with them.  Rory has 1800-1900 Beads of Courage ‘earned’ during two battles with cancer.  They hang on the door of his bedroom.  They are a constant reminder of his journey, his strength and his vulnerability.  And our fear.  When people hear the word remission there is a misconception those diagnosed have been saved.  But it is not the end of the journey.  There is no easy way to see cancer insidiously growing inside a person.  Fear, anxiety and anticipation may sound like over the top paranoid responses to the unknown.  Devastatingly for us they were founded when nine years later Rory was diagnosed with osteosarcoma.  Every day of his life we subconsciously monitor his symptoms; lack of appetite, fatigue, deterioration in his ability to walk, ‘funny’ eyes, back pain, in case it is a symptom of something far worse.  Rory’s next four-monthly scan has been scheduled for 1^st March and I can feel the anxiety starting to build.  This anxiety will be more challenging to manage now Omicron is spreading in our community.  We accept it is likely someone in our family will catch it and probably infect Rory but how will his body cope?  It is an unknown.  There are many questions.  Will we be able to manage his illness at home?  When is the tipping point for hospitalisation?  What happens when we get there as Rory cannot manage without Sean or I by his side.  Will adequate medical treatment be available?  What complications will arise?  For a parent it is scary stuff.

We try our best to put this fear to one side and live our best lives. Slowly we are developing a comprehensive plan for Rory’s days now he is no longer in school and cannot work.  On Monday he attended the New Plymouth Men’s Shed with Co-ordinator Phil for the first time and he was back with Peter on Thursday.  Driving Miss Daisy have been great transporting him into town.  He spent two mornings at the Junction with Tash and Deanne.  He has also volunteered at Woodleigh Nursery, Doggy Day Care and the SPCA.  The gym continues with Dane.  

Colt has had an interesting week.  I had to intervene with the school when it became apparent he has been the victim of serious bullying.  In typical boy fashion he did not speak up at the beginning.  .  As an intermediate Colt enjoyed his first session of Technology at Inglewood High.  Yesterday morning we went to Kaponga for firewood.  It got hot so Sean and Colt took a dip in a big pool on the back of the farm.  Colt got a small nip on the ankle by an eel and let the whole community know!    

Thank you Catherine and Ricky for the firewood, wild blackberries and apples.