Rory Gardiner's Webpage

13, Nov, 2010

Saturday 13th November 2010

We’re back in the same place again .... standing in front of the mountain which contains the threat of cancer.  It makes me feel like the journey of our lives is a loop road, which we keep going around.  It is difficult to feel like we are making progress, and the risk to Rory’s life is diminishing.  This situation is something we have to accept, as we cannot change it, which is hard because it generates anger, worry, sadness, frustration, impotence, and fear.  Even though Rory has been in remission since December 2009 he will not be given the ‘all clear’ until March 2014.  We have to be grateful he is with us and treasure every day.  The regular trips to the hospital are part of our lives, so we return to Auckland tomorrow.  We are going together to support Rory, and because it would be too hard for me to cope on my own.  Rory is facing three days of tests; a full neuro-psychological evaluation to measure the impact of the treatment/radiotherapy he received on the functioning of his brain, blood tests, an MRI to check if he remains cancer-free, audiology to test his hearing, a dental examination as the radiation is likely to have damaged his teeth, and an appointment with his Oncologist.  We are going to try and break up time at Starship with outings to some of the boys favourite places, with some of their favourite people, the lovely Moneypenny (Lyn), and Trudi and Kody Johnston who are travelling down from Dargaville. 

Rory continues to get on with life.  He is enjoying swimming lessons, and has accepted maths tuition with Marion from Clever Kids (Thank you to Warren and Clever Kids for their support).  Rory continues to receive an injection of growth hormone every night before bed.  A scary letter arrived from the Endocrinologist who wants to meet with Sean and I when he is in Taranaki in early December.  The Growth Hormone Committee want Sean and I to sign a letter saying we understand and accept the risk receiving growth hormone poses to Rory i.e. although it is not cancer-causing it is a growth enhancer and could, theoretically, cause any residual cancer cells to grow.  I had to take a couple of deep breaths to accept what we will have to do.  The Ministry of Education confirmed Rory will receive Teacher Aide support in Terms 1 and 2 next year.  A decision will be made about Terms 3 and 4 in Term 2.  There are ongoing issues at school which I think is par for the course.  I have met with the Special Needs Co-ordinator to discuss issues of consistency, participation, modified physical activity, ensuring Teacher Aide cover, and health care (Rory is finding it hard to cope in the heat). 

Sam started swimming lessons this week, an addition to his guitar lessons.  He is a whiz in the kitchen every Saturday morning making pancakes for breakfast.  He received his second Golden Reach Award at school which we were proud of.  He has been walking with me before breakfast 3-4 times per week, and I’m sure it’s me getting slower not him getting faster.  I now have 6 weeks to go until my due date.  The baby is growing (or at least I am!) and has hiccups on a regular basis.  The two of us had to brave a visit to the Dentist this week to get one of my back molars repaired.  Sitting in the chair was a very uncomfortable experienced.  I am managing to work around 15 hours per week at Taranaki Regional Council and there is no shortage of tasks to complete.  Sean is well and doing the same old stuff. 

It has been a quieter fortnight on the exploration and adventure front.  We attended a pot luck tea for cousin Logan’s 11th birthday.  He had a very cool Homer Simpson birthday cake.  When it got dark (and cold - it was 7o at their block under the mountain) the bigger ‘boys’ let off several boxes of fireworks.  There were some laughs as rockets took off in all directions, one into the house, and another between one of the kids legs and under a bush.  Rory went to the Gun Show in New Plymouth with Sean and Poppa.  We all attended the Frankley Primary School Gala day and caught up with my good friend Janine.  The boys enjoyed treasure hunting in the garage sale in the hall, and we came away with plants for the vegetable garden, sweets, and a bag of books.  We walked the Herekawe Stream track with Nana and Poppa.  The Taranaki Tree Trust facilitated a five year planting project adjacent to the stream a few years ago, and we remember participating with the boys one winter when we visited Taranaki.  The plants have grown and appear healthy, although the area is looking very weedy.  We heard frogs calling at a pond at the top of the track.  Afterwards the boys conned me into Mr Whippy’s at Ngamotu beach.