Rory Gardiner's Webpage

20, Jul, 2010

Tuesday 20th July 2010

Congratulations to our good friend Mandy McGregor, designer of Rory’s website.  She has been selected for the NZ archery team which will compete at the Commonwealth Games in New Delhi in October this year ( ).  We are all very proud of Mandy.  What an achievement!

It was back to school for the boys and I yesterday.  They were happy to be back.  We started the term as we mean to go on, walking to school in spite of the ominous weather.  Rory’s teacher, Mrs Peters, had a shuffle around in the holidays so Rory has new children at his table; Liam, Luke, Florence and Hayley.  Rory’s new Teacher Aide’s started yesterday.  Mrs Bracey (a retired experienced teacher) supports him from 10am-1pm, and Mrs Frost (an experienced Teacher Aide) provides supports from 1-2pm.  I will continue to cover 9-10am, and 2-2.30pm.  School finishes at 2.30pm this term as the lunch ‘hour’ has been shortened to half an hour because of the cold wet weather.  It is time for Rory to have some independence from me, and for me to be able to have some time away from him feeling secure he is safe and being cared for.  It does feel strange easing stepping aside, I am doing it gradually over the next two weeks, although I have a feeling it is more for myself than Rory!

We easily filled in the last week of the school holidays.  I almost finished the unpacking.  Three boxes of the boys gear remain, and the baby’s room needs organising.  The boys played nine holes of golf at Kaitake with Nana while I cadied.  Rory walked the whole nine holes by himself for the first time, and played six.  There were good and bad shots by all!  Uncle Jason, Logan and Mikayla came for lunch (and Sam got to spend an afternoon at their place).  The boys taught Logan The Moa Hunt while Mikayla pushed the discarded boy Cabbage Patch around in a dolls pram.  We had a power cut last Friday afternoon for five hours after a car nearly felled a power pole on the main road through Inglewood.  It was fish and chips for tea by lantern light (thankfully the half of Inglewood with shops had power!).  We continued our walks around Inglewood, the boys leading me (by some distance) on their bikes.  We went for a walk along the Bell Block walkway.  It begins at the northern end of the new extension to the Coastal Walkway.  We followed it north along the dunelands, beach, and farm margin to Bell Block beach/Mangati Stream.  The beach was short, steep and full of round boulders which you could hear crashing into each other as the waves hit the shore.  We called into Hell’s Pizza to visit Sandy and collect the donations she had for Rory.  Unfortunately we missed Sandy.  Her customers had generously made $310 in donations to assist us.  We were blown away.  This will cover the courier and GST costs of Rory’s bike conversion (which we had to pay), and our expenses while we are in Auckland next week (thank you so much Sandy).  On the final afternoon we had a ‘welcome’ visit from our good friends Darlene (Muppett) and Marc, and their children Jordan and Angel, fellow Inglewoodians. 

Sean has gone to Blenheim for the NZ Biosecurity Conference with the Taranaki Regional Council.  It is the first conference he has attended in 11 years, and it has been eight years since he was last in the South Island.  It is an excellent conference, and I’m sure it’s going to be a valuable opportunity for him.  He is keeping busy over the winter with short runs, and shooting targets in the back yard with his bow in anticipation of bow hunting. 

I am feeling increasingly emotional as we count down the days until Rory returns to Starship (next Tues/Wed).  It is very hard to return every three months, knowing we could be on the receiving end of terrible news.  Only 60% of children with high risk medulloblastoma survive to five years (from diagnosis).  If the cancer returns Rory will have <5% chance of survival.  He looks so well, to us, on the outside.  He is getting stronger, and his life is establishing a new ‘normal’, as is ours.  I wish I could look inside him and see what is there, for reassurance that what we see on the outside is not an illusion.  I am scared.