Categories: General
      Date: 08, Aug, 2016
     Title: August 2016 Update

I finally let life get the better of me and I stopped writing Rory’s blog.  It was a battle to find the time.  The fantastic team at Smokeylemon Website design, led by my good friend Mandy, published all my blogs and the messages of support from 2009-2015 in a hardcover book.  It was an incredible gift for us  xox

And then 15 months went by  ........  I continue to write a daily diary for our records, and in case one day I want to resume Rory’s story.  However, I thought an update was long overdue.

Rory is now 14½  years old.  He started Year 9 at Inglewood High School at the start of 2016.  A Neuropsychology assessment in 2015 showed he has cognitive/thinking deficits as a result of radiotherapy.  He has very slow processing speed, difficulty with complex tasks and impaired memory.  None of this is enough (even coupled with his other disabilities) to qualify him for Teacher Aide support at school.  To ensure he could cope I had to cut two subjects out of his timetable (Social Studies, Textiles).  The blank spaces are used as study periods when Rory goes to the Learning Unit to catch up on his class work and complete homework.  At Parent- teacher interviews this week the teachers gave us a glowing report on how nice Rory is and how hard he works in class.  He is managing to achieve in all subjects, although Maths is border line and a struggle.  Rory continues to show a passion for Science and Te Reo.

In his spare time Rory enjoys swimming (he swam with Inglewood Swimming Club over the summer months), Scouts, building lego, electronic games, and reading graphic novels.  He continues to be part of family tramps, bike rides, hunting, and volunteer activities for conservation.  A month ago in the Term 2 holidays our family were lucky enough to be offered a week at Ronald McDonald House Retreat on Lake Rotorua.  We had an awesome time and packed plenty into the seven days.  The highlights were; hearing kokako at dawn in Kaharoa Forest, luging, visiting Wingspan where the boys got to hold a NZ falcon, white water rafting the grade 5 Kaituna river and dropping over 7m high Tutea Falls, and Waikite Valley thermal pools.

Medically Rory is complex.  Incredibly he remains in remission for brain cancer.  It has been six years since he was diagnosed.  For this we are grateful.  He continues to take growth hormone but this growth has slowed.  The Doctors put him on a puberty blocker for 18 months to give him maximum opportunity to grow but it was stopped in February.  We are waiting for puberty to resume.  If it doesn’t he will need testosterone injections.  He takes thyroid tablets daily for energy.

Rory has experienced three sudden sharp drops in his hearing (sudden sensori-neural hearing loss) over the last five years.  He can now hear half as well as he did in 2010.  He wears hearing aids full time, and the teachers at school wear a microphone pen which relays their voices directly to his hearing aids.  If he experiences any more drops in hearing he will be at the point where hearing aids cease to be effective.  This month we travel to Christchurch where he will receive an assessment for cochlear implants.

This year Rory was diagnosed with SMART syndrome, a rare new late effect in childhood cancer survivors.  SMART stands for ‘stoke-like migraines as a result of radiotherapy’.  The Doctors think this is the cause of his ‘episodes’ which now occur approximately once per month.  The symptoms vary from visual disturbance, blinding headache, facial droop and slurred speech, sleepiness and distress.  He receives pain relief for these episodes which have to be slept off.  We are recording all incidents.

Physically Rory continues to wear a VP shunt to manage the fluid in his brain.  His hair growth remains the same so he only has a little fuzz on his dome.  He struggles with co-ordination and his left side is weaker and under less control.  He has built up orthotics in his shoes to help provide stability and support from the hips down.  He has Raynaud’s phenomenon so still suffers from poor circulation in the hands and feet particularly in winter.

As for the rest of us ......

Sam is 16½ and in Year 12 at Inglewood High School.  He passed Level 1 NCEA with a Merit endorsement and is currently studying Level 2 (English, Biology, Statistics, Geography, PE, Tourism and Financial Literacy).  He has a girlfriend Frayja, and they have been together eight months.  During the summer of 2015/16 he qualified as a Surf Lifeguard and spent the summer patrolling as a volunteer at East End Beach in New Plymouth.  He remains passionate about football.  This year he is playing in the Mens league (Reserves) for Inglewood AFC and in the Inglewood High 1st XI, primarily as a striker.  He has his Learners Drivers License, and hopes to get his Restricted in a couple of months.  Sam remains a member of the Taranaki branch of Canteen, although things have been quiet this year.

Colt turned 5 in December 2015 and started Inglewood Primary in February.  This term he moved from the new entrant to the Year 1 class.  Although there were some first week jitters he has settled in well.  It helps that his best friend Neo remains at his side.  They are like two peas in a pod and have been this way for over two years.  Colt still has breath holding spells (where he passes out and stops breathing) in response to trauma but they are now only rare incidents.  Colt is playing First Kicks Football again this winter.  Sean and Sam have been co-coaching his team the Barracuda’s.  Colt is amazingly fit with excellent stamina.  He walks a long way in sometimes trying conditions on our many adventures.

Our family still lives in Inglewood, Taranaki.  Sean and I have both had a job change at Taranaki Regional Council.  Sean is now Environment Officer (Biodiversity).  His focus is on working with landowners and groups to protect native plants, animals and ecosystems.  My work with the Taranaki Tree Trust came to an end and I am now employed by Wild for Taranaki an umbrella trust for all those working to protect biodiversity in Taranaki.  The outdoors remains out passion.  We still spend a lot of time running, cycling, tramping, hunting and going on adventures.  I remain on the Taranaki branch Committee of the Child Cancer Foundation.  It is a challenge balancing our full life together but I am grateful every day.