Rory Gardiner's Webpage

04, Mar, 2010

Thursday 4th March 2010


This will be my last update on Rory's website until the 15th of March as tomorrow we are going to Auckland, and travel on to the Gold Coast, Australia for Rory's Wish on Sunday.  It is going to feel a little odd not taking time out every few days to download my thoughts and feelings.  I have been doing it for so long.  The first entry on Rory's website was on the 30th of March last year, 13 days after he was diagnosed.  It was the most traumatic time of my life.  I do not think about it too deeply or too often as the memories are overwhelming, and feed the fear I feel about the future.  It is hard establishing a new 'normal'.  No one has waved a chequered flag, or given us the green light.  The doctors have given Rory the most effective treatment they have, at as high a dose as he can tolerate.  Only the passage of time can show us whether it has been enough.  As a family we refuse to dwell on the possibility of relapse, although it is in my head every day.  We are picking up the pieces of our lives and putting them in place one at a time but it is slow and there remains a cloud of uncertainty in our sky.  Sean has returned to work, but cannot work full time as he wishes to attend Rory's appointments at Starship and help out at school once per week.  I have resigned from my job to support Rory in school, and we do not know for how long.  We are applying to the Ministry of Education for assistance but the outcome is unknown.  For financial reasons, and for support, we continue to be sheltered in Grannie and Grandad Gardiners home at Whakapara.  Although we miss having a home of our own, and have had to adjust to being in each others space, there is much happiness at living together.  At any time all the bricks could tumble down, and if they do it will be devastating.  But I refuse to succumb to the fear.  When I blog on Rory's website I talk to myself.  I forget anyone else can hear.  I re-live the events of the previous few days and let my feelings rise to the surface.  I can then think through them, make sense of them, and manage them.  It is therapeutic.  I value your messages of support when you feel my pain.  You have helped lift me on this journey so I can be strong for Rory, Sam and Sean.  I know I am going to feel a little disconnected while we are away.  But I will have plenty of wonderful happenings to share with you when we return. 

Rory has an appointment at Starship tomorrow afternoon for a preliminary Neuro-psychological assessment.  We have much to discuss with Psychologist Dr Katherine, both about Rory and our family.  We are spending tomorrow night at RM House, and have a free day in Auckland on Saturday.  Make a Wish are providing accommodation for us in Auckland on Saturday night and we fly to the Gold Coast on Sunday morning.  We have a full itinerary; Monday Sea World, Tuesday Movie World, Wednesday Lamington National Park, Thursday Dream World, Friday Australia Zoo, and home again on Saturday.  It is going to be a full on six days.  On Sunday I intend to collapse into a heap!

We left Whakapara a bit earlier this morning to avoid the traffic heading west to the Dargaville Field Days.  The school day started with a writing test.  When the time was up Miss Hallett and I briefly checked them so the markers could understand what the children had written.  They had written some wonderful, interesting, imaginative stories.  Swimming occurred before morning tea.  Rory had a session on the computer but got stuck as he didn't know how the programs worked.  He is going to need guidance as I didn't know what he was supposed to do.  After morning tea Rory had a final test to establish his reading level.  The rest of the class completed a problem solving worksheet.  When the children were finished they were able to choose a maths activity.  After lunch Miss Hallett read the class 'Mary has a brain tumour' produced by the Child Cancer Foundation.  Rory sat at the front of the class with her and supplemented the story with his own experiences.  He talked more than she did, and it took them an hour to describe Mary and Rory's journeys.  The children on the mat were alternatively surprised, squeamish, and curious.  I was proud of Rory and the way he spoke with knowledge, pride and courage. 

The week has flown by.  Monday morning at school always starts with assembly.  The Pal leaders and Senior Councillors had been chosen from the Year 6 children.  It was pleasing to see three of Sam's good friends standing at the front; Johnny, Conor and Dylan (well done boys).  I know Sam was disappointed he wasn't chosen.  The school decided to exclude him as we will be leaving at some stage during the year, which I thought was unfair.  Cancer has robbed Sam of a great deal of 'normalcy'.  It is sad this continues because of the cloud cancer casts over our lives.  Afterwards there was another round of testing for the class, and a reading exercise.  Rory struggled to work out the correct answers when more than one option was suitable.  Kody and Rory got the opportunity to build with the blocks during maths.  For handwriting I copied the work off the board onto paper for Rory so he could copy it into his book.  After lunch the children set up their homework books with spelling words, and a written activity, then had a brain storming session on the mat for their acrostic poems.  At 2.30pm Rory went back to the Dental Nurse for his second filling.  The injections obviously hurt as he squirmed in the chair but he didn't complain.  After school Sam had a swimming lesson at the Dargaville Pool.  Rory and I enjoyed throwing the ball in the hydrotherapy pool, and classmates Adam and Brody joined in. 

I was a bit daunted about going to school on Tuesday.  As Miss Hallett was away the class had a relief teacher.  It surprised me how unsettled I was.  I have grown comfortable in Miss Halletts classroom, with her vibrant style of teaching, and in the space she has created for me.  The school day started with swimming.  I took Rory to the Dargaville Hospital for a blood test.  He had some small purple bruises on his legs and I was concerned about his blood counts prior to our trip.  Rory took the finger prick in his stride, and thankfully his haematology was normal (apart from the lymphocyte count which is low but we knew about).  After swimming the children read The Amazing Machine on the mat and the focus was on inventive thinking.  The Word Works activity which followed focused on adjectives.  Rory tried to rush the worksheet so he could complete it quickly.  I tried to slow him down so he would answer the questions correctly but he got angry and frustrated "I know mum, I know"  so I said "If you know you don't need my help", and I turned my back on him to do a job.  A few minutes later he was going "psst psst Mum".  After morning tea the children worked on their acrostic poems.  Rory came up with  Risky




Prior to lunch the children sat in a circle challenging each other with their basic facts knowledge, and answering quizzes on the board.  After lunch the children did some work classifying nouns.  Rory didn't want to go to the Recorder lesson, claiming he was tired.  I let it go and he had a session on the computer.  I quizzed him about it on the way home.  Rory said he struggles to keep up with the other children as he has to hold the recorder with his left hand and play notes with his left fingers, and he struggles with breath.  I am going to speak to Mrs Mitchell the music teacher about Rory playing the glockenspiel instead.  This way he gets to learn and play music. 

Sean was on duty yesterday (Wednesday).  The day began with more testing.  I feel sorry for the students (and their teachers) at this time of year.  They are required to complete a lot of testing to determine where the children are at, and how they stack up nationally.  Fortunately there was down-time afterwards; reading and computer activities.  The great thing about having Sean at school is it is cool for him to be in the playground roughing it with the boys.  Seven children played with Rory, Sean and the sky ball on the asphalt yesterday.  After lunch Sean and Rory went for a swim at the Dargaville pool.  Sam had visited the pool earlier in the day with the seniors as practice for school swimming sports in a couple of weeks.  Sam was surprised at how quickly it felt to cover a length when he was racing other children, but how slow it felt when he was swimming up and down at lessons on Monday.  I spent the day at Whangarei District Council working on my report.  Both Sean and I had nervous energy to burn when we got home so we went for a run up onto the Puhipuhi plateau.  Sean has a thing about hills, so the run was all up and around, around and up.  We stopped on the way back to visit Sean's Great Nana, Ani Kaaro Nehua in the Whakapara cemetery.  It was very moving walking amongst some of the elders of the boys whanau.