Journey

I will never forget Saturday night, Rory handsomely dressed with a lovely partner on his arm attending the Inglewood High School ball.  It was a very special and proud moment.  In spite of all the challenges he was able to enjoy this rite of passage with the other Year 12 and 13 students.  The senior students from Te Awhinatia, and their families, enjoyed a lovely dinner together prior to the ball.  Rory and his partner Amber were co-ordinated in royal blue with a button hole and corsage.  After dinner they were collected by Caitlyn’s brother Jayde and taken to the ball in an old restored ‘pimped’ Chevy Impala.  You could hear it rumbling and roaring a mile away.  When Sean and I arrived at the high school they were smoking up the street.  Rory and Amber made quite an entrance as the Impala was lowered and they got out in front of the school hall.  Amber held on to Rory so he was able to walk into the ball without the walker, and introduce them to the Principal and the Chair of the Board of Trustees.  Sean and I stayed to watch them dance the first waltz.  It was wonderful.  Fatigue got the better of Rory so he only lasted until 11pm.  He arrived home just before the awards were announced where he and Amber took out Best Dressed Couple of the evening.  Rory also has memories which will last a lifetime. 

Watching Rory walk in on Amber’s arm was also heartbreaking.  He last attended an Inglewood High School ball in 2019 as a Year 12.  He was diagnosed with osteosarcoma two months later.  Two years have passed.  It is hard to comprehend the enormity of this time and see the deterioration in Rory.  The left side of his face has been rebuilt and when he walked in with Amber he stumbled and wobbled.  He can no longer participate in many of the dances.  Dancing requires intense concentration, there is a high risk of falling and his eyes go ‘funny’ (wobbly blurred vision).  It is so hard to accept.  It is also incredibly inspiring.  We met with Dr Stephen on Friday.  Rory’s CT scan (1 year post treatment) was NED (clear of cancer).  This was a huge relief but it was tempered by Dr Stephen’s words.  While the results over the last year show a positive trend the risk of reoccurrence doesn’t decrease significantly for another year.  Rory will continue to have CT scans four-monthly.  From year 2 to year 5 he will need regular scans of his lungs.  Sometimes it feels like there is a perpetual lump in my throat.  I hold on tight to the fact that on Saturday night our beloved 19 year old son was very much alive!

The ball has dominated the week but there are a couple of other notable mentions.  Rory and Natasha made their first visit to the SPCA to suss out volunteering for a couple of hours on a Wednesday morning.  Rory spent two hours at the Men Shed with Peter on Thursday and it is one of the highlights of his week.  On Friday morning he had a fasting blood test for his hormones for a follow up visit with Dr Sharma.  Yesterday Rory tried out his new hand cycle on a lap of Inglewood.  It is long, with a chair and slings to support his legs which stretch out in front of him.  It is powered with his arms.  We purchased it off Invacare for a good price as it had been their demo bike.  Unfortunately after a collision with a large harakeke bush the chain came off but two local men came to our rescue and helped me fix it.  Rory relished the bike ride, he has a greater degree of freedom with less of a struggle.  It also gives him increased speed and he can move out!

We express our heartfelt thanks to the following people for contributing to Rory’s special night at the ball; Dane for helping make him as strong and capable physically as he can be, Rob and Kingsway Menswear for sorting his formal wear, Cousin Shaun ‘the Bossman’ at Jet Charm Barber Shop and Barber Joey for gifting Rory a hot towel shave, Sam, Caitlyn and Jayde for organising the sweet ride and SENCO David and TA Jo for taking such good care of him on the night.  Last but not least to the lovely Amber who accepted him as her partner and enabled him to dance.