Rory Gardiner's Webpage

08, Feb, 2011

Tuesday 8th February 2011

Sometimes I feel angry.  Cancer could still be within Rory.  It could appear at any time, forcing another battle for his life, which statistics say he would be unlikely to win.  It isn’t fair this is the hand my beautiful son has been dealt.  He fought long and hard to get to remission.  It should be enough. 

There is a photo of Rory taken one month before diagnosis.  He is coming up the track from Waikara Beach on a hot summers day.  He is fit, carefree, confident, and happy.  It is one of my favourite photos of the ‘old’ Rory.  To look at him it wouldn’t have occurred to you two tumors were growing in his brain.  Sean and I certainly didn’t have any idea.  Apart from intermittent headaches, some with vomiting (which the Doctors told us were migraines) he was bright, healthy, and strong.  Looking back with hindsight there were subtle signs but we didn’t have the knowledge to realise they were part of the puzzle i.e. his clumsiness, and on the day before diagnosis strange movement of his pupils.  Due to damage to his cerebellum Rory continues to struggle with co-ordination, and spatial awareness, and remains weak on his left side. Clumsiness is par for the course, and with increased movement and activity Rory’s pupils flicker.  It seems more pronounced this week which frightens Sean and I.  There is no way to tell if the cancer has returned, apart from with an MRI scan.  The shunt in Rory’s head manages hydrocephalus (fluid on the brain) so headaches will only appear if the shunt fails or there is an immediate problem.  Sean and I watch and wait, talk to Doctor Stephen about our concerns, and take deep breaths to stay calm.  We hold strong to stay on the path to recovery, strive for a new kind of normal, and banish fear, for the sake of Rory and Sam.

The boys returned to Inglewood Primary last week.  Rory is a Year 4 (again) in Room 5 with Miss Smith as his teacher, and Sam is a Year 7 (first year Intermediate) in Room 13 with Miss Burleigh.  Both boys were lucky to have some of their good mates in with them.  For Rory this is a mix of girls (Alana and Hayley) and boys (Ethan, Luke, Alex).  Rory seems settled.  His teacher is using a microphone and sound system to make it easier for Rory to hear, and he has been largely supported by a Teacher Aide (TA).  Mrs Ellison has been covering while his new TA Miss Madgwick is absent for health reasons.  I am awaiting the final version of his Neuropsych report so I can work with the school to update his IEP (Individual Education Plan) for 2011.  The boys and I have been walking to school (and home) on fine days.  One wet day last week I dropped the boys at the school gate and Rory walked to his classroom to start the day without me (or Sean) for the first time.  I felt anxious, sad and proud.  I am always torn between being there to protect him and ensure he gets the best out of life possible and being absent to foster his independence, capability and confidence.  Rory has resumed swimming lessons one afternoon after school, and on Friday went to Ethan’s house for a play and enjoyed himself.  I was really pleased.  Rory resumes maths tuition with Clever Kids this week.  With great timing Sandy from Hells Pizza New Plymouth had collected $282 of donations for Rory.  These are much appreciated and almost cover the tuition fees for the term (thanks Sandy).  Rory has been back to Taranaki Base Hospital to receive booster immunisations as chemotherapy reduced their effectiveness.  He was stoic when he got a needle in each arm, and one solution stung quite a lot.  He was cheered up when a letter arrived from Kody in the mail.

Sam has also resumed swimming after school.  All of a sudden he has taken an interest in what he is wearing, spending the last of his birthday/Christmas money on a pair of compression shorts to wear under his shorts, much to Sean and I’s amusement.  Colt is now 7 weeks old.  He continues to grow and gain weight.  He sleeps through to around 5am, although woke last night at 2am for a feed.  He is a lot more alert, vocalising, dribbling and eating his hand, rolling onto his side, and he likes looking at himself in the mirror (a trait of the Gardiner males!).  He loves being in the front pack where he can see and be part of the action.  He likes going to the New Plymouth Hospice shop where Nana volunteers out the back so he can be fawned over by all the ladies, although they did put a $100 price sticker on his car seat and threaten to put him in the shop!  He had his final visit with midwife Paula who completed our antenatal care.  She is a lovely lady and I will miss her.  He had his first visit from Anthea the Ingelwood Plunket Nurse, and his six week check at the Doctors along with his first immunisations.  Yesterday Colt and I toured the early childhood education centres in Stratford in anticipation of my going back to work 10 hours per week in the middle of March.  I was quite shocked by the variability in quality of the Centres.  There are only two with separate areas for under 1’s (so they are safe and their well being is catered for), both have long waiting lists.  I was unprepared for the negative vibes and implied criticism from some people because I was chosing to put a baby into care.  I came away feeling like I wasn’t a very good mother, and failed to put the needs of my child first. 

Our weekend adventures have taken a back burner over the last fortnight because of the wet weather, and increased activity associated with returning to school.  We have walked the Te Henui walkway, and swum and walked at Everett Park.  We visited the boys Great Uncle Sid (who is 90 in March) and Great Auntie Olwyn, and had lunch with Nana and Poppa, Uncle Guy, Sacha and Corbyn.  We also had a bbq lunch with the girls (minus Mandy) as Cindy and her family were down from Auckland.  Cindy’s daughter Havana has grown into a little girl, and Cindy is expecting baby number two in July (Congratulations xx).  The men spent the afternoon cooking the bbq, playing games in the back yard with the kids, and taking them to the neighbouring school pool for a swim.  It was hard to tell who were the adults!