Rory Gardiner's Webpage

13, Dec, 2010

Monday 13th December 2010

We have celebrated three birthdays in our family over the past three weeks, Sam turned 11, cousin Mikayla turned 2, and Sean hit 39 (yes only one year away from the big 4-0).  Coupled with the lead up to Christmas there has been much celebrating. 

I am still in one piece and 39 weeks pregnant.  There was concern the baby might be born on someone else’s big day but he has shown no indication of being ready to join the wide world yet.  Christmas and Grandad Gardiner’s birthday (same day!) are rapidly approaching, and I have had many requests for the baby to be born before then - like I have any say in it!  I have finished work at Taranaki Regional Council, taking 13 week leave without pay.  The baby’s room is finished, the cot is set up, and I have packed my bag in case there is a mad dash to the hospital.  The Christmas shopping is done (thank you cousin David for providing some assistance as one of Santa’s helpers).  Now we just wait.  Sean’s nerves are a little frayed, he carried his cell phone everywhere, and is wary of every twinge.  I’ve lost count of how many times he has asked me ‘is it happening?’  A couple of weeks ago Sean was thrilled to see Northland tattoo artist Lani, who produced his ta moko, working at the NZ Tattoo Show in New Plymouth.  Sean’s ta moko tattoo incorporates Sam and Rory, and Lani added our third son, although his eyes are clear (because he is not yet born).  Lani said he will colour the eyes once the baby has joined the wide world.  Sean also added a tattoo onto his forearm for his birthday.  One night last week Sean and I sat down to watch the DVD ‘My Sisters Keeper’ about a girl with leukaemia who had a younger sister born to help keep her alive.  It was painful for us to watch.  We both closely associated with the characters and events in the film, and ended up in tears.  One of the hardest things about Rory’s battle with cancer is there is end.  For all he has endured the doctors cannot tell us he is going to make it, or that it is over.  At five years post-diagnosis (Mar 2014) he will be considered a survivor, but five years is a long time to hold your breath, and there are still going to be big bumps in the road which we can’t anticipate or prevent.   

Sam gave us a fright yesterday.  He was speeding down a slope on the New Plymouth coastal walkway on his ripstick (two wheel skateboard).  Sean made a comment, about how Sam riding at speed scared the begeezus out of him, as we came around the corner and found him on the ground.  Sam had fallen off and banged up and grazed his back, left leg, right wrist and left arm.  He was quite shaken, thank goodness he was wearing a helmet.  We picked him up and helped put him back together but he is pretty sore.  He was very quiet this morning.  He was very excited about turning 11 on the 1st of December.  There was only one present he really wanted, as he dropped many not so subtle hints in the weeks before.  Sean and I did a good job of throwing him off the scent so it was a real joy to see his surprise and delight when he opened his presents in the morning to see it there.  As usual he was spoilt by Grannie and Grandad Gardiner, Nana and Poppa Honnor, Auntie Teri and Uncle Guy (thank you everyone).  On the Friday night he had a sleep over with cousin Logan, and friends Robert and Alastair.  We took them to the New Plymouth Aquatic Centre, then picked up pizzas for tea.  The boys spent the remainder of the night watching a DVD and having competitions on their Nintendo’s.  The fun continued on the Monday as it was the Senior’s Big Day out at Inglewood Primary.  They caught a bus to New Plymouth and went to the movies, followed by an afternoon at the Aquatic Centre. 

Plenty continues to happen with Rory.  I met with the Ministry of Education and key staff at Inglewood Primary regarding Rory’s health needs and Teacher Aide allocation for 2011.  He has been allocated a Teacher Aide for 18/30 hours per week.  Terms 1 and 2 are confirmed, and Terms 3 and 4 are anticipated (based on a mid-year meeting).  Rory has been placed in a class with a single teacher and several of his friends from 2011.  Sean and I are pleased with this.  We have made the decision to reclassify Rory i.e. he will be repeating Year 4.  This was a hard decision for us to make.  He is reading, spelling and comprehending a year above his level, is well behaved, and in many ways has a maturity beyond his years.  Yet he continues to need support to learn, and his numeracy skills are poor.  He has impaired growth so is short, and cannot keep up with the physical activity of his male peers which is socially isolating.  We discussed the options for 2011 with Rory and he was comfortable with repeating Year 4.  He voiced a fear of going ‘up’ to Year 5, and made comments on what his inadequacies would be (which he had obviously heard us discussing).  I was annoyed to hear him talking this way.  Unfortunately there is often a lot of discussion about Rory in his presence, but not with him (due to his age and the complexity and scariness of what we care dealing with).  Sean and I try and talk with him as much as we can but there are obviously things which he has heard which slip through the cracks and implant in his mind.  We have received the draft Neuro-psychological evaluation and provided our comments to Dr Kathryn.  We will receive the final copy before the end of the year.  The key issues identified for Rory were; slow operating/processing speed, difficulty accessing his memory store accurately or fluently, difficulty with executive skills i.e. change in focus or between tasks, and with increased complexity, and maintaining attention.  Kathryn made suggestions which will help us teach Rory, and try to ensure he gets equal access to education over the remainder of his primary school years.  I made an application to the Variety Club for a laptop computer which could be used to assist Rory at school, with homework, and for extra tuition.  They generously granted his application, and Janko computers in New Plymouth are organising this for us. 

Rory has also had an accident.  He tripped in class and caught his right eye on the corner of the desk causing a shiner.  It is always hard to get to the bottom of exactly what happened as Rory’s memory isn’t always accurate and he can get emotional when pressed.  I am mindful of the risk of black outs/seizures so I make note of everything.  He has also lost two teeth, both on the top in the middle.  He even managed to swallow one eating a barbequed sausage (the tooth fairy came anyway).  He now has a huge gap (created by the loss of three teeth in a row) so the Christmas carol ‘all I want for Christmas is my two front teeth’ causes much amusement in our household.  Rory continues to receive growth hormone.  We met with Dr Craig, the Endocrinologist from Greenlane Hospital when he visited New Plymouth.  He gave Rory a physical, and measured his weight and height.  We discussed Rory’s growing pains (mainly in his legs), and he gave us a prescription to normalise Rory’s Vitamin D levels.  We have enrolled Rory in Camp Quality at the end of January.  It is an annual camp for children who have been diagnosed with cancer.  He is allocated a trained buddy (adult volunteer) who will stay with him all the time he is away.  It is a parent-free zoned.  We received a call from Rory’s buddy, an ex-army member who lives in Pamerston North, and is keen to meet Rory and our family prior to Camp. 

Rory has enjoyed two fun days with the Middle team at Inglewood Primary.  They had a Big Day Out and overnight stay at the school on a Friday night.  They travelled to New Plymouth on the bus, and in the morning completed activities at the Govett Brewster Art Gallery and Pukeariki (museum).  They spent the afternoon at the Aquatic Centre.  I went for the day and brought Rory home for a rest mid-afternoon as he had been sick all week.  Sean took him back to school for dinner (fish and chips) and then some outdoor games.  They arrived back at 8pm as we had decided it would be better if Rory slept at home.   The Middle team also had a Christmas creation day.  They spent the day in the hall making Christmas decorations, at a number of stations in their groups.  They had a break in the middle of the day for a shared lunch.  Rory caused a bit of a stir when he arrived at school with a live Gum Emperor moth which Sam had found on one of our morning walks.  We looked it up in the NZ insect book so Rory could tell the other children about it.  He and Mrs Bracey released it at lunchtime. 

We have managed to find a little time to get out and about over the past three weeks.  We visited the Stratford A&P show on a very hot Taranaki day, then watched the first threatened species release of three NI brown kiwi chicks (Pate, Miner, Nutty) into Rotokare Scenic Reserve as part of ONE (Operation Nest Egg).  It was a milestone for the Rotokare Scenic Reserve Trust, who have poured an astronomical number of hours and considerable $$ into environmental restoration.  Kaumata and kuia were on hand to welcome the visitors.  We attended a weeding day organised by the North Taranaki Branch of Forest and Bird at Te Wairoa Reserve, a 5ha bush remnant between Inglewood and Lepperton.  We spent some time hand pulling wandering jew, and walked the trap line set up through the block  so Sean could provide comment.  We attended the CCF (Child Cancer Foundation) Taranaki branch Christmas party at Ngamotu beach.  There was a big dig, a bouncy castle, a bbq, and Santa arrived on a Hookers truck with a present for each of the children.  It was a hot day so Sean and the boys had a quick dip in the sea before we headed home.  On Saturday we drove out to Santa’s Choice to pick ourselves a real Christmas tree.  We were given a trolley and a hand saw and sent off into a paddock to choose a tree from the hundreds which were growing there.  This was no easy task, particularly for Sean who insisted on finding perfection.  45 minutes later we finally had one on our trolley.  It was put into a special wrapping machine, tied and placed on the back of our trailer.  The boys put a lot of energy into decorating it on Sunday morning and it fills our lounge with its bright colour and sweet scent. 

In the spirit of giving at Christmas we made a donation to the Starship Foundation for their project to upgrade Level 6 at Starship Children’s Hospital, where Rory received the first nine weeks of his treatment, and we want to thank Sandy, the staff and all the customers at Hell’s Pizza New Plymouth, who continue to support Rory, and our family, with their generous donations.