Rory Gardiner's Webpage

16, Jul, 2014

July 2014

While we were looking at some old photos this week Colt piped up and asked “why has Rory got hair?”  When Rory began his journey with cancer five years ago we were swept along too.  It is impossible to measure the impact on each of our lives, but for me it has been huge.  I have been with Rory every step of the way.  I forced myself to be strong, positive, and brave when he was scared and in pain.  I refuse to mourn for the Rory he could have been, and instead focus on the Rory he is now.  I have fought all the battles; for his life, for his health post-treatment, for his education, and to ensure he has quality of life.  I have also worked hard to ensure our family lives the life we were meant to live.  But it has taken its toll.  I feel scarred and battle weary.  My first response to issues is to come out of my corner with fists raised.  The cumulative effect of continuous trauma, and the requirement to dig deep even when I have nothing left, has rendered me fragile.  I don’t have the resilience to cope with ‘other’ life events as well as I used to.  Over the past four months there have been considerable challenges.  Our beloved Grannie Gardiner was diagnosed with kidney cancer, Rory had to endure management of a new late-effect and the trauma of having his hand shut in the door, and I was finally brought to my knees by a miscarriage at 41 years old.

Sean and I must have taken our eye off the ball with all that has been happening.  When my period didn’t arrive I waited a few days, then couldn’t recall or find record of a period the month before.  The two positive pregnancy tests were a huge shock.  A baby was not what we wanted, and I panicked and over-reacted.  Our lives were already overloaded,  how were we going to cope with baby number 4?  I made an appointment with Family Planning, and they organised a blood test, swabs, and a dating scan.  Sean came along to the scan but it was too early to see anything definite so I was somewhere between 5-6 weeks pregnant.  I sat down with the Hospital Social Worker and discussed our situation.  I was completely overwhelmed.  I booked myself in for the first available appointment for a medical termination in three weeks time.  I didn’t want to be pregnant but I didn’t want to terminate my baby.  There was no easy way out.  My natural response was to feel connected to the baby growing inside me.  My body felt pregnant, and I felt protective.  I refused to do anything which would jeopardise the baby and I started taking pregnancy multi-vitamins.  I started thinking about how things would have to change in 2015 to accommodate our new arrival.  We didn’t share the news with anyone but our mothers.  At six weeks I started to experience spotting, stomach cramps and back pain.  A blood test showed the baby had died and I was miscarrying.  I felt an overwhelming sense of grief which I descended into.  It was like being in a fog of the deepest sadness.  I cried continuously and everyday life was out of focus.  For 24 hours I experienced contractions like the early stage of labour, and I passed our baby.  I buried him under a kawakawa seedling in our section.  The following two weeks were exhausting.  I found it hard to control my emotions and concentrate.  I cried a lot, and had the shakes.  In addition to the grief I felt anger and guilt.  I never had a chance to make peace with the pregnancy, to accept it and feel glad.  I never got to cancel the termination.  My baby died during a whirlwind of conflict thoughts and emotions, not within the loving embrace of our family.  I was angry at my body which had failed.  My other three pregnancies were without complication.  What went wrong this time?  I blamed myself for it all.  I am glad I didn’t go through with a termination.  The loss is so huge I am not sure I could have made it through the fog if I had made the decision for our baby to die.  There was no one to talk to.  It was not a topic I could bring up in conversation, especially because we had considered termination.  I am scared I will forget the baby.  There is nothing tangible to mark his life, only a couple of positive pregnancy tests and a sheet of test results.  Sean bought me a copper ring to mark the life we lost.  Every day I look at it as its colour changes and I think about the child who is not here.

We have also been distressed, afraid and worried about Grannie.  She has been feeling unwell since early in the year, and following a battery of tests was diagnosed with cancer.  It was a huge blow for all of us.  Grannie has devoted her life to her family.  She has worked hard, and given so much, asking for little in return.  She has led a healthy life, barely taking a sick day off work.  Grannie and Grandad took us in toward the end of Rory’s treatment and sheltered us for nine months when we couldn’t survive in the world alone.  She deserves to be heading into retirement in good health so she can finally be selfish and do all the things she has wanted to do.  Grannie had her kidney removed, and Sean and his sister Teri helped Grandad with Grannie’s post-op care.  We were hoping she would head down the road of recovery, but there have been complications.  Every day we anxiously wait for results of tests, and the word of Doctors.  It has been incredibly hard being so far away, and not being able to walk at her side.  Grannie – we want you to know we love you incredibly much.  We’re not going to let you go anywhere xoxoxo

Rory reached his five year anniversary and it was a time of mixed emotion.  It didn’t seem right to celebrate, even though he reached a milestone the Doctors weren’t sure he would see.  There was definitely a celebration on his 12th birthday.  He shared a party with his best friend Ethan, who was born on the same day, and family and friends.  Rory was lucky to be gifted a birthday cake from Operation Sugar who provide free custom-made cakes to seriously ill children in New Zealand.  Helen from Toko made an awesome Lego Star Wars chocolate mud cake which blew Rory away.  It was much too good to eat, although we did and it was delicious.  Amanda Ritchie photography donated their time and took some special photographs for us on the day.  After Mike and Michelle loaded their car with kids and gear, we did the same, and drove north to the Urenui campground.  We parked by the river and cooked a bbq lunch while the kids swam, fooled around in the mud, rode the kayaks, and played cricket.  The kids discovered a tame wild rat living in the rocks and they tempted it out with pieces of food to see who could get the closest.

Rory loved staying away for a week at Te Wera on the Inglewood Primary Intermediate Camp.  Sean went along as parent help and they had a great time taking part in all the activities.  They came home on the Friday tired and muddy, and while I was happy to see them I wasn’t so thrilled about the washing!  Rory has been playing soccer on Saturday morning in the 12th grade for Inglewood Football Club.  Mike is the coach and Sam has been assisting at practices.  The team hasn’t had a win yet but have been improving as the season has gone on.  Rory plays in defence and received Player of the Day following one game for his efforts.  Rory has been enjoying the monthly Halberg Parafed Sports Club activities.  Sean and the boys went to table tennis, and one Sunday afternoon 30 of us went cycling on the New Plymouth Coastal Walkway, which was followed by a feed of pizza.  In his spare time Rory has been busy making loom bands for our family and his friends.

Rory has found being an Intermediate a challenge.  I have had two meetings with the Principal, Teachers and Special Educational Needs Co-ordinator (SENCO) about Rory’s health, wellbeing, and learning.  Rory lost his hearing aids several times in Term 1, and came home confused on a number of occasions.  One day while he was with us shopping he ran out into the traffic to get to me as I had remained behind in a store.  I keep stressing he needs concrete tools to learn, clear repeated instruction, additional time, and follow up.  He has moved classes into Room 13, and his new teacher is Mrs Kowalewski.  Anne Ferne the Ministry of Education Deaf Advisor has been monitoring Rory in the classroom to ensure it is set up for him to hear.  Rory has enjoyed being part of the Assist (Gifted and Talented Kids) programme for Science, and the elective programme on a Wednesday afternoon.  Rory chose survival skills which has a Bear Grylls flavour.  Sean taught one session on how to make flax lines to catch eels, and how to fashion stone tools.  I attended Parent-Teacher interviews with Rory.  He works very hard at school and is well behaved in class.  He is having a lot of success but he is likely to be below standard in literacy by the end of the year, and is below standard in numeracy.  The School is going to trial a computer programme called Jungle Memory next term in an effort to improve Rory’s working memory.  Rory is the guinea pig, and if it is successful they will look at offering it to other children.  I have joined the ‘Change Team’ at Inglewood Primary to help the school work on improving learning and achievement for ‘at risk’ learners.  Rory continues to attend Clever Kids for numeracy tuition.  Rory found himself in trouble at home after we discovered he had been helping himself to money to buy lollies at the dairy, where he had been meeting other boys before school.  It was difficult to get to the bottom of what was going on, whether other children were bullying, coercing, or promising him things to do it, or whether it was his idea.  We sat down and had a talk with him about the problem, and the way forward.

There have been many things going on medically.  Rory had his Year 7 immunisation, and an influenza vaccination.  The Doctors have increased the dose of the growth hormone (1.2mg/day) to allow for Rory’s age, height and weight, and his daily dose of Thyroid has been increased to 100mcg/day give him more energy .  Rory was placed on a semi-urgent waiting list to see a physiotherapist at the Hospital to address the issue of his sore legs, and increasingly distorted leg alignment and movement.  That was 5 months ago.  We took matters into our own hands and organised for Rory to see a private Podiatrist.  She recommended a change of footwear for his pronation, and orthotics to correct the position of his feet and lower legs.  We organised this support and it has helped him immensely.  He is moving more naturally and is more stable.  The issues continue with his hearing.  Testing in April and July showed the hearing in his left ear has again declined at the lower frequencies, with no obvious cause.  It is very noticeable when he doesn’t wear his hearing aids.  He is still suffering from frequent sores in the left ear caused by rubbing of the hearing aid ear piece.  He has been referred to the Ear Nose and Throat Specialist (but the wait could be months), and casts have been taken for new ear pieces made of a different material.  The Paediatric Endocrinologist informed us Rory was going through puberty too rapidly, and it would compromise the effectiveness of the growth hormone, therefore puberty needed to be stopped.  After blood tests, and an x-ray to determine his bone age, the injections of Lucrine (puberty blocker) began.  He has now had four injections, each necessitating a visit to the Nurse, and two sets of blood tests.  The Lucrine is stingy and goes into his thigh.  The latest blood tests show his puberty is well suppressed.  From here Rory requires a monthly dose of Lucrine for up to two years.  Rory had a nasty accident in April.  I accidentally shut his hand in the hinge in the bathroom door.  He caught the middle three fingers on his right hand.  It caused a fracture in the end of his ring finger, and tore two nails out of their beds.  There was a lot of blood and it was very painful for him.  I took him to A&E where they gave him laughing gas, and (a lot) of local anaesthetic so they could put the nails back in their beds.  It was horrible, and I felt sick inside because I had pushed the door shut.  Rory is the last person who should have to endure further trauma.  He was given antibiotics and pain relief, and the fingers were regularly dressed.  In the end both fingers healed, although the nails dropped off.  The new ones are half grown.

To end on a positive note, Kathryn the Support Worker for the Child Cancer Foundation arranged for a star to be named after Rory.  He received a certificate and a map from Stardome in Auckland, and a trip to the New Plymouth observatory is planned.

Sam has been absorbed by the soccer season.  He is playing for Inglewood Football Club and was in the Youth Under 15 Division.  The team was doing so well it was moved up into the Premier Division part way into the season. Sam is a Striker and has scored a number of goals, and received Player of the Day.  He tried out for the Taranaki U16 rep team, and made it to the second trial, along with his good friends Taylor and Kieran.  Unfortunately he missed out.  It was tough this year as there is no U15 team, so there are twice as many boys vying for the limited number of places in U16.  He was very disappointed.  Sam is trialling for Inglewood High’s 1st 11 soccer team, and he and Sean have spent a few mornings yelling at the tv for the Fifa World Cup in Brazil.  Sam is playing social basketball on a Friday night at the High School, and has taken part in three TSSSA events; triathlon, orienteering, and cross country where he finished 17/60 in his age group at Taranaki champs in Hawera.  Sam’s mates are growing up alongside him and he has attended Jordan’s 14th, and Taylor and Kieran’s 15th birthdays.  Sam saved up and bought an Iphone so his friends and the internet are now only the touch of a button away.  I have attended Parent-Teacher interviews with Sam, and there is another session coming up.  Sam is achieving in all subjects, with several Merits and Excellences.  His teachers say he could do a lot better if he applied himself.  They all say he has huge potential but isn’t very motivated.  He also needs to speak up more in class, and follow-up his learning with review.  We have been discussing his subject choices for Year 11 (NCEA Level 1) and it is likely he will stick with; English, Maths, Science, PE, Digital Tech, and Te Reo.  During the last week of Term 2 received a phone call from the Deputy Principal of Inglewood High saying there had been a misunderstanding between Sam and another boy over a soccer ball.  The other boy received a cut to the head as he fled and ran into a pole, and Sam took a punch to the face.  We were proud of Sam for apologising to the boy, without being asked, for his part in it, even though he didn’t cause the injury.  Canteen provides support for Sam, and wonderful opportunities.  He continues to attend meetings, and is standing for the Taranaki General Committee in 2014/15.  Sam flew to Christchurch with two other Taranaki kids to attend Sibling camp.  The weekend was filled with activities, and there were sessions with a Psychologist and Counsellor.  I took Sam kiwi listening on Mt Taranaki with Biodiversity Officer Dean Caskey from TRC.  We drove the 4WD truck up the summit track to the bottom of the Puffer and sat and listened for two hours (6.30-8.30pm) as the sun went down.  We had a beautiful view of the mountain and the ring plain.  It was very cold.  Sam fell asleep in his sleeping bag on the track.  Disappointingly we didn’t hear any calls.  If we had we would have recorded the time, whether the birds were male or female, the direction and approximate distance.  One weekend we called in to see one of Sam’s Intermediate teachers – Miss Burleigh.  She had received Tree Trust funding for her restoration planting project and I needed to sign off the work.  It was lovely to see her again, and her little man James.  She showed us around their lifestyle block where they are working to become sustainable, and spoiled us with banana cake and feijoa cider.

Colt has been taking important steps on the path to growing up.  He has moved from the Kowhai Room (2-3.5 year olds) to the Rata Room (3.5-5year olds) at crèche.  During the transition he made short visits, and the time was gradually increased.  At first he was shy and reserved, and there were some tears about returning to the Kowhai Room, but he is now settled.  There was a blip in Colt’s toilet training over number 2’s but he is back on track.  This was timely as children can’t move up to the Rata room until they can manage their toileting.  Colt moved into the Rata Room permanently on the 1st of July.  His best friend Neo transitioned at the same time so this was a huge help.  Colt no longer has a sleep during the day so regularly falls asleep half an hour earlier at night, sometimes at the tea table.  Neo and Colt are inseparable at crèche, and they are usually together when I pick Colt up.  Colt finds it hard on a Tuesday when Neo is not there, but will often play with Tyrese or Ngatai.  Neo, his mum Shelley, and little sister Imaia, came over to our house for Colts first official play date.  We also went to a play date at Neo’s house.  The boys were out on the trampoline when Colt started to cry.  Neo came in and said “Colt touched a fly and now he’s crying”.  I thought that was odd as Colt loves insects.  I went out to investigate and saw Colt had touched a bee which had stung his thumb (his first sting!).  Sean and I attended Colt’s first parent-teacher interview.  The teachers at crèche spoke of Colt and Neo’s developing friendship and how they were learning from each other, of Colts enjoyment of active play and the sandpit, and how he was sharing his love of the environment with the other children.  He is increasingly finding his voice, and he loves stories.  On dress-up day Colt went along as a cowboy and Neo went as half Spiderman half Superman.  I attended the Matariki celebration and listened to a story, sang a waiata, helped Colt and Neo make kites, and shared kai.  Colt was quite possessive, defending the space around me.  “This is my mum” he told the other children while he hung onto me.  When we gave up Playcentre Colt and I were free agents on a Monday sharing things we both enjoyed; op-shopping, exploring the Zoo, feeding ducks, walking in the parks, and playing on the playgrounds.  Unfortunately this came to a halt when I took started my new job.  I am now working 20 hours per week spread over four days.

Nana continues to help with the boys in the holidays so I can work.  They get spoilt with movies, trips to the pool, ten pin bowling and mini-put.  Rory likes helping Nana work in the New Plymouth Hospice shop.  She also helps out with Sacha and Corbyn, my niece and nephew, who have recently celebrated their 12th and 10th birthdays.  Happy Birthday!  Poppa Honnor celebrated his 76th birthday (Happy Birthday Dad), Uncle Guy his 38th (you’re catching me up!), and my good friend Dianne had her birthday (we hope Riccardo spoiled you rotten).  We had an enjoyable lunch with the girls and their families at Easter.  Last month we were treated to a surprise visit from cousin Wendy and Allie.  Wendy was Allie’s nanny when her and Jason did their OE in America.  Allie came to stay with Jason and Wendy for her final year of high school and is very much part of the family.  Allie is now in the US Navy, based in Hawaii.  She was home on leave before being posted on a ship in the Middle East.  In April we had a short trip up north to stay with Grannie and Grandad Gardiner in Northland.  Sam had his first run to the top of Puhipuhi with Sean and I.  We showed him the Whakapara marae, and where Ani Nehua (his great great Nana) is buried.  We walked around Mimiwhangata coastal park and had a cool swim, and stewed bucket loads of Grannie’s feijoas.  We climbed Mt Manaia which is the eroded remnant of a large volcano at Whangarei Heads.  It is considered to be the tap root which connects all Northland tribes.  On our way to Northland we spent a night at Kelly Tarlton’s Underwater World in Auckland.  This was organised as a field trip by the Taranaki branch of the Kiwi Conservation Club (Forest and Bird).  We went into Kelly Tarltons at 7pm after it had closed for the day.  A talk in the education room was followed by a walk through the Antarctic Encounter Exhibit to see the penguins.  We watched the sting rays being fed, and had a look behind the scenes at the special creatures in the holding tanks.  The children were able to feed the fish.  We explored the underwater tunnels, and the children were able to play spotlight when the lights were turned out.  At 10pm it was time to set up our mattresses, sleeping bags and pillows, and the boys decided they wanted to sleep in the shark tunnel.  It was pretty crazy going to sleep with rippling water and the silhouette of sharks cruising overhead.  We were able to have a second look around in the morning before breakfast at the Stingray Bay Cafe.

I am still running although it has been a struggle over the past few months.  Sean is running regularly on the mountain, and one day the boys and I cycled down from the carpark.  It is a fast cold exhilarating downhill ride with the wind in your face.  I attended the Child Cancer Foundation (CCF) Mothers Lunch, and Kathryn has taken on the cause of late-effects to increase awareness and generate better support.  I have joined the CCF Taranaki General Committee for 2014/15.  Sean, Rory and Colt enjoyed an afternoon at the Naki Nitro Karts with other CCF children and their families.  Rory took his friend Ethan and they raced around the indoor track in single karts, while Colt rode in a double kart with Sean.  Rory and Ethan began driving nervous, cautious and slow.  It was great to see them gain confidence and speed, and see the looks of excitement on their faces.  Rory, Colt and I attended the community planting day along the Herekawe Stream walkway.  We put 10 native plants in the ground, including regionally significant Waiwaka or Swamp Maire.  I finished my job as Co-ordinator of the Taranaki Tree Trust after 3.5 years.  I am still employed by Taranaki Regional Council, but I have taken a two year contract as Taranaki Regional Biodiversity Co-ordinator.  I started in early May and my job is to assist the different groups which work on biodiversity across the region work together more effectively to achieve greater gains.

We have continued to explore the wilds of Taranaki.  We spent a day at Parininihi Whitecliffs walking the extended southern loop up to Te Horo stock tunnel.  There was a considerable amount of rock hopping south along the beach to Waipingao Stream, and Colt fell face first into a puddle.  The boys all enjoyed the spray from the waterfalls falling onto the sand.  We tramped the Tahurangi Lodge Loop on Mt Taranaki descending the Razorback track.  We ate lunch sitting in the tussocks.  They were shedding masses of fairy-like seeds which were being carried away in the wind.  For the first time we completed the Pukeiti Puffer trail run/walk.  Rory, Colt and I walked the 7.3km loop, Sam and Izaac ran it, and Sean ran two laps (14.6km), coming in 3rd.  It was muddy and slippery with a couple of steep climbs, and Colt managed to walk it all!  Izaac and Colt came away with spot prizes.  We attended a community planting day at Waikirikiri Beach, Okato and helped plant 3,000 Pingao and Spinifex in the dunes.  Sixty sets of hands made the job a lot easier.  We attended the release of Tieke Saddleback into Rotokare Scenic Reserve.  The birds came by car from Bushy Park in Wanganui, and were carried into the bush in boxes.  We walked the Ridge track afterwards and were lucky to hear Tieke calling close by on the far side of the lake.  We had a family lunch for Mothers Day with Nana and we went for a walk along Te Henui walkway.  The boys enjoyed the iceblocks in the comfy chairs while Colt bounced on the bouncy castle at the Big Wave Cafe at the end of the walkway.  We tramped to Wilkes Pools along the new barrier free track on Mt Taranaki, and carried on to the Waingongoro Hut.  Colt walked on his own across the swing bridge for the first time, closely followed by a very nervous Sean.  We had lunch at the hut and a possum had bitten the block of soap sitting by the water tank.  There were a lot of pigeons in the trees feeding on Kanono berries.  After a snow fall we climbed the summit track to Tahurangi Lodge.  The carparks at the Visitor Centre were full.  It was a hard hot climb in the snow, and it was still, quiet and white.  We carried the toboggan and sleds so we could play in the snow.  Sam rode all the way down the Puffer, and I thought Colt was going to try and run all the way down the mountain.  On a warm sunny day we walked the Kokowai Track loop, under the Dieffenbach cliffs and across the Boomerang slip.  We saw a NZ falcon hunting, and were treated to spectacular views.  We saw the red ochre water at the head of the Kokowai spring which is caused by iron and manganese from the earth.  We found a patch of unusual feathers which turned out to be peacock.  We spent two days up the Uruti Valley in North Taranaki.  On the first visit we walked the Rerekapa Track, driving through the Moki tunnel.  There was a frost and it was surprisingly freezing when we got out of the car.  A NZ falcon was flying over the neighbouring paddock.  We had morning tea at the Boys Brigade Hut, and lunch at Rerekapa Falls.  I found a kiwi print in the mud.  The track was an easy grade through farmland, bush and swamp, but very wet and muddy underfoot from the rain.  On the second visit we tramped part of the Moki Track (12km return).  The track runs under papa cliffs and the clay was thick and slippery.  Taylor and Sam caught a young kid (goat) off the side of the track, and we heard several Bellbird and saw one NI Robin.  We made it through the Moki stock tunnel, and nearly to the bush section of the 18km long track.  On our way home we took a detour to check out the Uruti tunnel, and I felt nervous walking through it.  One Sunday morning we drove north to Tongaporutu for a working bee at the Grey-faced petrol colony which is enclosed by a predator proof fence.  We carried out some fence maintenance and filled the bait stations for rats and mice.  After lunch we scrambled down the cliff to access the beach to explore the caves and the rock formations.  It is a spectacular part of the Taranaki coast.  We look forward to exploring new parts of Taranaki in the future.