Rory Gardiner's Webpage

29, Jul, 2011

Friday 29th July 2011

We slipped into, and out of, Auckland last week for Rory’s latest MRI scan.  A diagnosis with cancer is like being in a game of Russian roulette.  Even though with each clear scan Rory’s chances of surviving medulloblastoma increase there is still a chance we will get bad news.  It’s something we can’t escape from.  It is something we have to accept.  Being completely blindsided once has made us nervous and fearful.  Thankfully it was good news.  Rory’s MRI was clear of cancer, and his blood tests were normal.  Rory accepts the visits; getting the iv line in his arm, spending half an hour lying still in the MRI machine, and being checked over and talked about by Dr Stephen and ourselves.  His next MRI is scheduled for mid-November, and will be done in New Plymouth.  Dr Stephen is travelling south to hold an outreach clinic so we can see him here.  We are starting to discuss late-effects (of cancer and its treatments).  Rory still has little hair, and because of the radiotherapy is at increased risk of skin cancer.  We have to protect his head and neck with sunblock and a hat.  Rory also still suffers from slow processing speed, and occasionally fatigue.  Overseas several of the medullo children are on low dose Ritalin to ‘speed them up’ during the school day to enable them to cope and achieve.  This may be an option for Rory in the future. 

We have continued with our adventures.  While in Auckland we managed to squeeze in a trip to Rangitoto Island, catching the Fullers ferry from the bottom of Queen Street.  It was a warm sunny day and we climbed to the summit, walked around the crater, then back down to the beach.  Rangitoto is a large volcanic rock with islands of vegetation.  It is a little like being on another planet.  There were lots of people with the same idea as us and we were all treated to great views of Auckland and the Hauraki Gulf.  We re-walked the southern half of the Whitecliffs walkway in North Taranaki, but in the reverse direction.  For the first leg we walked north along the beach (timed with low tide) but Sean got the tide wrong.  As he was out by an hour the waves were lapping against the rocks and cliffs leaving little room to pass.  While running along the sand to avoid the waves Rory disappeared in a deep hole, and got soaked to his arm pits.  We had to strip him and re-dress him with whatever we had which was spare and dry.  He ended up completing the walk in Sam’s gruts, Sean’s thermal singlet, his wind jacket, and wet sneekers and socks.  He was an amusing sight, but never complained about being uncomfortable.  The exercise kept him warm, particularly the 642 steps to the ridge line.  One stormy Sunday we took the boys along the New Plymouth Coastal walkway on their scooters.  They rode from Te Rewa Rewa Bridge to Hickford Park and back while the strong winds whipped up a huge west coast sea.  We attended the mid-winter Christmas lunch of the north and south Taranaki branches of Forest and Bird.  This was preceded by a walk on the mountain on the Waiwhakaiho-Mangaoraka track with a group of 20 Forest and Birders.  The bush track follows the Waiwhakaiho River .  We got great views of the river bed and could imagine the force of the water at its peak.  The walk took a bit longer than expected so we were late for lunch!  At home we took part in the New Zealand Garden Bird survey, recording the bird species, and maximum number, which visited our section in one hour (we got six species).  The data sheet was sent to Landcare Research to be analysed by a scientist who publishes a report on his findings.   

The school holidays have passed by quickly.  After our trip to Starship the boys went north to stay with Grannie and Grandad Gardiner for the remainder of the first week.  They had been looking forward to it for weeks.  They loved spending time with their grandparents, and were lucky enough to catch up with old friends Conor, Zac and Matai (thank you Kay and Tracey).  Sean and I were looking forward to a little quality time together but I was struck down with a winter virus (temperatures over 39 degrees).  I spent the most part of three days in bed.  The bug lingers and I am now on antibiotics.  It was nice to have a little one on one time with Colt.  He is now seven months old, and almost crawling.  He is the world’s best roller, but can’t quite get his back end moving even though he can turn on the spot 360 degrees.  He is still being breastfed, although is onto three small baby meals a day.  He is adventurous when it comes to food, trying almost everything we eat.  He has had another cold, and received his five month immunisations when he recovered.  He has settled into a routine with Sharon from Porse two days a week, and every second Monday with Nana Honnor.  He loves going to Space (Playcentre baby group).  He loves looking at, and listening to, the other babies, being under the lycra parachute, hearing the mothers sing, and helping himself to objects from the treasure box.  He has suffered from cold feet all winter so I saved up and bought him a pair of possum skin booties which he wears every day (the fur is on the inside).  He is talking a lot more, almost mastering Mum mum mum and blowing raspberries.  For the remainder of the holidays the boys and I have; been to the movies to see Cars 2 (Colt slept through half), shopped for treasures in the Hospice shop, visited the Public Library, and the boys enjoyed a pizza making session with Sandy from Hells Pizza New Plymouth.  Sandy and her clients have donated $523 over the past couple of months to support Rory.  This which will pay for his swimming lessons next term, and half of his maths tuition fees with Clever Kids (thank you so much).  We were thrilled to experience the biggest cold snap in Taranaki in 18 years, when we awoke and it was snowing.  Sam and Rory went to work with Sean at the Regional Council in Stratford and the snow was over a foot deep.  They had great fun in a snowball fight with the other Pesties (Pest Management Officers), and building a snow man.      

We extend our sympathies over the past six weeks to my wonderful friend Dianne who her lost her dad suddenly, and to my Auntie Olwyn and cousins Diana, Juliet, Sonya, Dean, and Paul who lost their husband and father, my Uncle Sid.  Uncle Sid also passed away suddenly, aged 90.  I remember Uncle Sid as a man who had a zest for life, a twinkle in his eye, and time for us kids.  I knew he had been a POW in WWII, captured by the Japanese, and that he didn’t speak about it.  I learnt more at the funeral.  At 17 years old, in Britain, he joined the Navy serving on the HMS Exeter.  This was sunk in WWII in the Pacific, and those seamen who survived were captured.  Uncle Sid was put to work in a shipping yard in Tokyo and a coal mine in Nagasaki.  His 21st birthday passed in a POW camp.  He wasn’t liberated until the end of the war.  Hearing a little about his journey gave me greater understanding, and appreciation for the way he was.  He was right.    

We also said goodbye, but in a different way, to John Sigurdsson from Sport Taranaki, who headed overseas on his OE.  John worked with special needs children in the Taranaki community, empowering them for sporting activities.  He provided support to Rory when we (and the Halberg Trust) converted his bike to a trike, sent us invitations to special needs sporting events i.e. ten pin bowling, athletics and surfing, and visited Inglewood Primary to teach the teachers and children alternative games to can play which allow everyone equal participation.  We look forward to working with Laura who is filling in for John in his absence.

The boys return to school next week and I know they are looking forward to it.  They managed to cram in a lot at the end of Term 2.  Sam spent a week working with the Assist group of gifted kids.  The Stratford Assist kids arrived every day on a bus and the combined group (around 25 children) commandeered an empty classroom and were challenged with a wide variety of learning activities i.e. writing and performing theatre scripts for the radio, designing and conducting science experiments.  Sam made it into the speech finals (with his speech on Bear Grylls) but isn’t very keen about delivering it this term.  He took part in the Inglewood cluster inter-schools soccer tournament (approx. 6 schools).  Sam’s team won the Intermediate section, and he was named the best player from Inglewood Primary and carried home the shield.  He was very proud, and very dirty having played bare foot in the mud all day.  Rory has a couple of upsets toward the end of the term.  On one occasion I had to pick him up with a tummy ache, and on another I arrived at school to find he had fallen playing games in the hall and hit his head hard.  When Rory is unwell or has an accident I find it hard to keep control, to fight down the anger and fear.  It’s my natural fight or flight response, I feel myself gearing up to deal with something which could be big and difficult.  It takes me several days to relax again and feel everything is alright.  Rory had his hearing re-tested at Taranaki Base Hospital, and we met with Laughton King an ex-Psychologist who taught a section of my Teaching Diploma.  Laughton is now working as an Educator, and specialises in children with learning difficulties.  He gave me some insight into what Rory faces in the classroom, and how we as parents should support him (thank you Laughton).  Rory finished the term with some fun.  The school held a teddy bears picnic, and Rory took Dog from Footrot Flats.  He and Dog were unique faces in a crowd of ‘normal’ children holding teddy bears.