Rory Gardiner's Webpage

06, May, 2013

May 2013 update

I sometimes wonder whether to continue writing about Rory’s journey.  It has become harder to find the time to put my fingers on the keyboard, and last month Rory reached four years of survival since the day of diagnosis.  Rory survived the intensive months of treatment where his life hung in the balance, and has remained in remission during the time when the risk of relapse was greatest.  Many of the people who were our safety net during this traumatic period have moved on, and rightly so, as time and distance have separated us.  But something makes me continue writing, so the boys will know their story, and so those who read this will understand.  Rory’s journey with cancer will never be over.  Cancer, and the treatment Rory endured, has marked him.  It is impossible to hide; the lack of hair, the scars and shunt, hearing aids, and his awkward gait.  Some days, for Rory’s sake, I wish he looked ‘normal’.  Even more than this I wish radiotherapy hadn’t made complex tasks difficult, interrupted his memory, made it hard for him to manage negative emotions, and slowed his processing speed.  He said to me in the weekend “I want to be a Vet mum”, and all I could say was “We’ll see”.  Every day I look to the future, because he is alive, and he has so much potential.  The Late Effects Manual, which documents the health issues Rory could face over the remainder of his life, is several inches thick.  We can only ever take one small step at a time, and ride over the bumps in the road as best we can.  The support of our family, friends, and the network of warm, generous people who follow Rory’s journey, is invaluable.  And so I continue writing.

Rory and his best mates Ethan and Kody turned 11 in March.  Rory’s 11th birthday party was held at Lake Ngangana in Waitara.  Eight of Rory’s friends, and our family, spent three action packed hours at the lake; swimming, exploring, kayaking, and attempting to catch trout and perch.  We had a picnic afternoon tea on the shore.  The celebrations moved on to Ethan’s that night with a disco from 7-9.30pm.  As a result Rory slept past 6am the following morning which is a rare event!  Rory has spent quite a lot of time at the Audiology Department at Taranaki Base Hospital.  I was overjoyed and relieved to be told he has recovered most of the hearing he lost a couple of months ago, although no one has any answers.  He has been fitted with new hearing aids in both ears, and with them he can hear a lot of what is going on around him.  Rory has also had an Endocrinology appointment.  The daily dose of growth hormone has been increased to adjust for Rory’s increase in height and weight over the past two years.  We have been told to be vigilant for the signs of shunt malfunction (headaches, vomiting and lethargy).  Rory has generally been keeping well, although he had a nasty fall at school, badly grazing his palms and left knee, at the end of Term 1.  He has finished swimming lessons for the summer, and starts soccer practice next week.  He is happy to be back in a soccer team with his good mate Ethan, whose dad Mike is a great coach.  Rory competed in the Weetbix Tryathlon for the third time, only this year he did so alone and on a two-wheel bike.  It was just Rory and I attending this year and the event was held at Ngamotu Beach in New Plymouth.  Rory was in the 11 year old age group.  Uncle Guy, who was life guarding, accompanied Rory along the 200m swim offering encouragement and support.  I helped Rory transition onto his bike and spent the 40 minutes he was gone (8km) with my heart in my mouth expecting him to have an accident, but he didn’t.  I helped him transition onto the run and he was determined to go on his own.  He ran the whole distance (1.5km) apart from a short walk at the turn around.  He was quicker than I expected to cross the finish line so I only just got a photo.  I was very proud of him, he has courage and tenacity in bucket loads.  Rory was happy to return to school today to start Term 2.  He was Senior Student of the Week at Inglewood Primary towards the end of Term 1, and has commenced guitar lessons.  He was chuffed when his photo appeared in the Child Cancer Foundation magazine Share dam dropping with Sam on Waingongoro River.

Sam and his friends are growing up.  For a while there was a plethora of birthdays.  His best mates Taylor and Keiran turned 14 and there was a full-on paintball game, then good friends Campbell and Jordan turned 13.  The boys all went to a disco at Inglewood High School one night as a fundraiser for the school ball.  Sam brought home his interim report for Year 9 and received very good and excellent in (almost) all subjects.  We went along to the Parent-Teacher interviews where I got the opportunity to chat with some of his teachers.  Sam has been enjoying the Taranaki Secondary Schools Association inter-school sports.  He did the cycling leg of the Triathlon as part of a team with Taylor (swim) and Richard (run) at Ngamotu Beach, and the Orienteering in a team with Keiran at Pukekura Park in New Plymouth.  They achieved the second fastest Junior boys time.  Sam has been attending Canteen Taranaki Committee meetings, and walked some laps for Canteen at the Relay for Life with Sean and Colt.  In the holidays Sam spent time at a recording studio in New Plymouth voicing a character in an animated short film made by his friend Kalind.  Sam has started soccer practice.  He is play for Inglewood Football Club in the <15 grade.  One of the highlights of Term 1 for Sam was spending five days on a deer stalking trip in the bush at Tataraakina with Sean and Grandad Gardiner.  Unfortunately it was too dry for Sam to shoot his first deer but Sean got two red deer which filled our freezer with venison.  We would like to say Congratulations to Miss Burleigh, Sam’s intermediate teacher, and her partner Matt, on the birth of their first baby James.  We visited Melissa in the Maternity Ward at the Hospital.  I got a hold and it was lovely.

Colt is very much a little man.  He loves nothing more than being in on the action.  When the boys have friends over Colt is their shadow, calling their names, performing for attention, and positioning himself in the thick of it.  He had his first proper haircut at a hairdresser on the 5th of March.  She cut off his long blonde locks so his hair now appears to have a ginger tinge.  His motivation for sitting still was a lollipop at the end of it.  He continues to split his time between educator Sharon’s (Porse) and home with me.  He walked all the way to Playcentre for the first time (1.5km), and got to ring the bell for morning tea when I was on Duty.  In the holidays he enjoyed a trip to Chipmunks Playland with Nana.

The warm sunny weather continued in Taranaki until early April so we managed to fit in plenty more adventures.  One afternoon we went to the Inglewood eeling competition at Lake Briar sponsored by Hunting and Fishing.  We were kept busy with hand lines and pieces of venison trying to catch eels in the lake.  Although we had lots of bites we couldn’t hook one up.  Only three eels were caught (and released) by the large number of families there.  We have been tramping at Whitecliffs twice.  The sea has been warm and clear so even I have been swimming.  On the second trip we tramped further north, up a ridge to the second trig.  Although we made it to the right location on the map there was no sign of the trig.  I discovered it hidden in bush beside the track.  It was a hot sunny day and there were lots of wasps around including a group attacking a mouse-sized creature on the track.  We gave them a wide berth as I am allergic.  Unfortunately I mis-read the tides and instead of taking a short cut back along the beach to the car it was high tide so we had to walk back up to the first trig and out the way we came in.  We were all knackered that night.

We have ticked off the final two huts on Mount Taranaki.  We tramped 3 ¼ hours up onto Fanthams Peak to Syme Hut, the highest hut on the mountain.  The second half of the tramp (1 ½ hours) was up loose scoria with some rock climbing.  Sean carried Colt and I helped Rory.  We were lucky to follow the Stratford Tramping Club up as the track markers put in by DoC were thin on the ground, and not positioned along the easiest route.  We had a ½ hour rest and lunch at the hut then made our way back down.  It was a quicker descent as we all surfed the scoria.  Rory and I held hands, and I used the tramping pole as a brake/anchor.  By the time we made it down to the steps we were covered in grey/brown dust.  Our last hut to tick off was the oldest, the Kahui Hut up the Kahui Track.  There are Kahui holes on the side of the track, they are circular and up to 7m deep.  They are suspected to have been used by maori for storing bones.  Colt walked about 1km then was carried by Sean.  It was a gradual uphill walk for approx. 2 ½ hours.  We heard rifleman and whitehead.  We had lunch at the hut and met the Taranaki Botany Group and Taranaki Ornithological Group exploring on our way down.  The rata was beautiful and flowering red in the trees.

We made our first visit to Kaupokonui Beach in south Taranaki.  On our way south we stopped at Kaponga diary which has Taranaki’s most extensive lolly selection, and did a few laps of the roundabout at Manaia.  At Kaupokonui we walked north along the beach to Otakeho Stream, up onto the cliff tops, and south back to the bridge.  We saw where a Little Blue penguin was roosting under vegetation, and two threatened native plants (Pimelea and Tetragonia).  We stopped to talk to a guy who was digging for fossils.  On the south side of the river we discovered an old machine gun pillbox.  Rory and I crawled inside and had fun pretending to be old gunners.  We had a picnic lunch beside the river then Sean took Colt up the river trout fishing.  I took Sam, Daniel and Rory down to near the Kaupokonui river mouth and they went swimming and boogy boarding.  It was a great day.  We completed the new Mangaotuku walkway in New Plymouth.  It’s only an hour so Colt was able to walk half way.  We have been apple picking for the first time, and celebrated Poppa’s 75th birthday, and Uncle Guy’s 21st (again).  We attended the Inglewood Primary School gala day, and Rory and I worked for half an hour on his class stall selling tea, coffee and glow bands.  We have been out to activities twice with the Taranaki branch of the Child Cancer Foundation.  I went to the annual Mothers Pamper Day at Burgess Hill.  It was a wonderful treat.  In pairs we gave each other a facial, had lunch, then soaked in a foot spa and got our nails painted.  Each mum got a goodie bag of products to take home, which I don’t even know how to use!  I took the boys to the family skating event at the East End rink in New Plymouth.  The boys used roller blades, and I had a go on the roller skates.  There was plenty of Hells Pizza for tea.  We were going to go to the CCF craft day in the holidays but Sean and I were struck down with a nasty tummy bug which brought us to our knees for almost a week.

In the school holidays we spent a week in Northland with Grannie and Grandad Gardiner.  We spent a day exploring Mimiwhangata coastal farm park.  The boys enjoyed running on the beach and tramping over the farm.  Grannie and Rory found a baby squid 4cm long.  We completed the western Northland tourist loop.  We drove north to Kaikohe and put flowers on Great Grannie’s grave.  At Rawene we looked in The Boatshed and along the water front.  At Whirinaki we visited Great Grandad’s grave, the first time Sean had been there in the 30 years since Great Grandad passed away.  We drove through Opononi and Omapere, stopping at Waimamaku for a milkshake at Morrell’s cafe.  At Waipoua Forest we got out to stretch our legs at Tane Mahuta, and called in to see my good friend Heni at Te Roroa Visitors Centre.  We stopped for a walk and a swim at Kai Iwi lakes.  The water level of the lake was the lowest we have ever seen it.  In Dargaville we called in to see Trudi and Kody, Mark Wily at Blahs and the staff at Hunting and Fishing.  We had one day exploring somewhere new tramping the Peach Cove track at Whangarei Heads.  There were two kiwi poos on the track and we heard kaka and bellbird.  Sam and Rory had a swim in the Cove, and there was a huge Pohutukawa growing on top of and down around a boulder at the Hut.  We got hot climbing the many steps up out of the Cove.  On our way home we were lucky to see 10 Royal Spoonbill feeding on sand/mud flats on a falling tide in Whangarei Harbour.  We had lunch with Denise and the Miller lads, and the boys had a quick dip in the pool and a soak in the spa.  Sean and Grandad went deer stalking for sika in Russell forest.  Sean was unlucky as he got close to one but couldn’t get a clear shot.  The boys had a Grannie day, which involved shopping, lunch and a movie.  Colt and I had a hot chocolate with Dianne and visited the opshops.  On our way home we called in to see Pat Honnor (Uncle Harry’s wife) at Jane Mander retirement village.  On our last day we drove out to Whananaki.  We walked across the bridge over the estuary and around the sand spit.  It was an incoming tide so we had to wade a little.  It was like quick sand on the edge of the sandspit, and 20 NZ dotterel were roosting.  The boys made sand castles, collected sand dollars, and had a swim.  They revealed in the freedom of running bare foot on the sand in the isolated wilds of Northland.