Rory Gardiner's Webpage

27, Oct, 2014

October 2014

The definition of time is “the indefinite continued progress of existence and events in the past, present, and future regarded as a whole”. While time is indefinite the amount of time we have for life is not. I want to pay tribute this month to some special people who knew the value of time, who have packed plenty in and used some of their time for the greater good.

The definition of time is “the indefinite continued progress of existence and events in the past, present, and future regarded as a whole”. While time is indefinite the amount of time we have for life is not. I want to pay tribute this month to some special people who knew the value of time, who have packed plenty in and used some of their time for the greater good. To Denise Phillips, wife of Taranaki QEII rep Neil, who lost her battle with cancer this week, to Peter Hensley, husband of Taranaki Child Cancer Support Worker Kathryn, who died suddenly a few months ago, and to our good friend and Doctor Andrew Miller who this week bravely faced the start of his own battle with cancer. We wish to acknowledge you, and thank you for reminding us how precious every day is. How it is not to be wasted. I don’t believe in bucket lists. If there is something you want to do make it happen. Anything is possible.

Our little baby was only with us for a few weeks and then slipped through our fingers.

In keeping with the belief of making every day count our family decided to take some time out to celebrate the fact Rory had made it to the milestone of living for five years after being diagnosed with brain cancer. We couldn’t celebrate when it came around on the 17th of March as we felt mixed emotions. Rory’s birthday at the end of March was an extra special one, but Kathryn talked me into applying for one of the CCF Holiday homes to mark this year, are we were lucky to be allocated a week in Arrowtown in September! Rory and Colt had never been to the South Island, and Sam only had a fleeting weekend with Canteen so there was much excitement. Before I share our holiday with you we would like to say a big thank you to the Child Cancer Foundation, Rotary, Bluebridge Ferries, Aspen on King Motel (Cathy) and Tussock Restaurant (Chef David) in Timaru, K-Jet in Queenstown, and Diana and John in Dunedin. Without your support our wonderful trip would not have possible. We have many great memories and plenty of stories to tell.

We decided to drive south and it was the boys first trip on the ferry across Cook. To our huge surprise and delight Mike Long, Rory’s companion at Camp Quality for three years, was parked behind our van so there was an opportunity to catch up on all the news. I was lucky enough to see a pod of Common dolphins riding the bow wave of the ferry while I stood on deck. After a night in Blenheim we drove south to Ohau Point to see the NZ fur seal colony which contained plenty of pups. A small group of Giant petrel were feeding on a freshly killed seal carcass so there was much discussion about sharks! In keeping with our goal of never driving over the same stretch of road twice we took the Inland Kaikoura Road (SH70). It was windy with big hills and many single-bridge river crossings. Along the Inland Scenic Route (SH72) were followed a large group of university students on a hikoi. The students were as decorated as their cars and were making many raucous pit stops keeping us all amused. After crossing the Waimakariri and Rakaia Rivers we stopped for the night in Timaru. We were put up for the night at Aspen on King and treated to delicious meal in the Tussock Restaurant. The boys all had a ‘food baby’, which is when your stomach sticks out because you ate too much! It was back on the road for a third day from Timaru to Queenstown (SH8), and Sam reckoned we were deliberately taking ‘100km detours’. Our first stop was at Opihi where we looked at the maori rock art. There are paintings in over hangs and caves where the moa hunters sheltered. They are now behind mesh fences on DOC reserves. We had hoped to find the Opihi taniwha, the most famous maori rock art image which was on the 2 shilling stamp (1960) but didn’t have any luck. Our second stop was at Lake Tekapo. The small stone church of the Good Shepherd has the most incredible view of the lake and mountains through its giant front window. The Mt John Observatory had expansive views of the MacKenzie District. We drove through the Aoraki-MacKenzie Starlight Reserve, one of only four in the world with the darkest night sky known to humans. Outside of Twizel we stopped to feed the farmed salmon at High Country Salmon. The boys were delighted by the fast silvery fish which leaped out of the water and splashed us as they went for the pellets. Our biggest detour was on a gravel road was to the Clay Cliffs at Omarama. We took a short walk to 5 million year old limestone formations when lead into an open cavern. It felt like stepping back in time. As we crossed Lindia Pass it was snowing lightly. There was a pit stop in Cromwell for delicious icecream at Joe’s Fruit Shop, then it was through the Kawarau Gorge to the CCF holiday house in Arrowtown. We were all glad to stop moving!

The house in Arrowtown is lovely, modern, spacious, beautifully decorated, warm and light, and contained everything we needed. It is a home away from home. It didn’t take us long to recover from the journey as the following morning we were up and eager to explore. The Chinese Village in Arrowtown was a real eye-opener. Around 3,500 Chinese came to Central Otago to work in the gold fields and send money home, of these 1/7 perished. There are several restored huts in the Chinese Village and interpretation panels which tell their story. We went for a short walk on the Arrow River Trail, and enjoyed the famous sticky buns from Provisions Cafe. We spent the afternoon getting our bearings around Queenstown. We enjoyed the thrills at Dark Ride, on the Canyon Coaster movie ride simulator and during the Los Banditos gun fight. These are multi-sensory interactive attractions and you wear 3D glasses and sit in motion seats. Afternoon tea consisted of cookie and icecream sandwiches at the Cookie Time store. On our way home we walked across the historic Shotover Bridge. When we awoke the following day there was snow on the hills and snow flurries so we decided to spend the day in Wanaka. On the way we stopped at Kawarau Bridge Bungy, the home of bungy jumping. Sam jumped off the bridge and fell the 43m drop while we all watched on nervously. He came up buzzing and loved it. At Cromwell we explored the historic precinct on Lake Dunstan which has been restored and has several resident artists. We had lunch on the shore of Lake Wanaka and watched some Southern Crested Grebes diving. An enjoyable two hours was spent at Puzzling World. The boys enjoyed exploring the illusions rooms and tilted house, and Sam and Rory beat Sean and I to complete the outdoor maze. Afterwards we climbed Mt Iron, a glacier carved rocky knoll 250m above the surrounding land. We came home via Cardrona Valley Road, getting out briefly at the summit of the Crown Range. There was snow in the tussocks and it was cold. We spent the next three days in Queenstown. One morning we had morning tea at the Mr Whippy store then rode the Skyline Gondola up Queenstown Hill to spend a couple of hours luging. Speed was required to increase the thrill so Sam and Rory rode the fast track, and Colt rode with Sean as I was too slow. The family deal consisted of boxes of jellybeans on the way out, and it’s a wonder our teeth aren’t rotten!. In the afternoon we drove out to Ben Lomond station. Sam, Colt and I walked around Moke Lake while Sean and Rory tried their hand at fishing. On the second day we rode the K-Jet on Lake Wakatipu and up and down the Kawarau and Shotover Rivers. Ciara from K-Jet came to see us off and brought sunnies for the boys to wear which came in very handy. The ride was fast and the 360o turns exhilarating. The sprays of cold water took our breath away. We were lucky to get a front row ride back across the lake which was bumping and nerve wracking. After lunch we drove up to the Remarkables skifield (1600m). It is a 14km uphill drive, largely on gravel road, windy with sheer drops. The views are impressive. We rode the magic carpet to the Base to ask directions from the Patrollers, then tramped up to Lake Alta. It was a hard climb as there wasn’t a track and the snow was up to knee deep. Sean was told off for zigzagging up the fast ski slope with Colt on his back. I’m not sure why we were all surprised to find the lake frozen when we got there. We played in the snow and had fun making our way down. I think we provided entertainment for the skiers and snowboarders using the chairlifts as they couldn’t understand why there were people walking up the mountain underneath them. On the way home we called in to the Lakes District Museum at Arrowtown to learn a little more about the area we temporarily called home. On the final day we walked the Mount Crichton loop track (3 ¼ hours) through beech forest. The track follows 12 mile Creek, which was mined for gold. Along it is DOCs oldest hut. It was built out of stone by Sam Summers who mined the area, and it is now 85 years old. There is an amazing rock fissure to squeeze through nearby and a lovely waterfall. To use up the last of our energy we spent the afternoon at Site Trampoline in Frankton. The warehouse contains four trampolines, a bouncy ramp and a foam pit. The largest tramp is one of eight in the world which gives the highest bounce. With very little effort you find yourself flying high.

On Day 9 we left Arrowtown and drove to Dunedin. Our stops included; the Roaring Meg Hydro Dam, glass jewellery artist Marie Velenski in Cromwell, the Clyde Dam, Alexandra Museum, and carver Luke Anthony who makes exquisite native birds out of recycled timber in Ranfurly. The Central Otago landscape is expansive, dry, rocky and barren. It is interspersed with small quaint towns which look like they have been frozen in time. At Dunedin it was straight to the Cadbury Factory for a tour. With a guide we learnt about the chocolate making process, and were given loads of free samples. We all enjoyed the shot of liquid chocolate (smooth, sweet, creamy), and the one tonne chocolate fountain inside the old chocolate crumb silo. The Factory was infused with the smell of chocolate. It was lovely to spend two days staying with my cousin Diana and her partner John. They made us feel welcome and at home, and spoilt us. We started the weekend with a visit to the Dunedin Farmers Market, where we each chose something delicious for morning tea. After a quick look at the Railway Station we spent two hours in Otago Museum. We were in the Tropical Forest when they released the newly hatched butterflies which flew around us in the hot steamy air. There were many laughs in Science Discovery World. Rory held flaming hydrogen bubbles and Sam lit a hydrogen bomb which went of with such a bang I shook the camera and didn’t get a decent photo. We climbed Baldwin Street, the World’s Steepest Street, and rolled jaffas down it. We spent a few minutes of reflection at the Memorial to the 200 Maori prisoners from the Taranaki wars. They were held in caves on the Andersons Bay Causeway and forced to form the road and harbour wall. Many never made it home. The boys had a play on the playground at St Kilda, and we walked along the Esplanade and waterfront at St Clair. At the end of the day we were taken out to dinner by my good friend from university Kerron and her husband Darryl (thank you both). It was pretty cool seeing their kids Kara and Jamie chatting with our boys. On the Sunday we visited Orokonui Ecosanctuary with Diana and John. We took a self-guided walk through the cloud forest which has been enclosed by a predator proof fence since 2007. Bellbird and Tui were numerous at the feeding stations and a delight to watch. The afternoon was spent on Otago Peninsula. We showed the boys the Happy Hen shop and called in to Taiaroa Head in the hope we might see a Royal Albatross, but no luck. We took a tour at Penguin Place to see the Yellow Eyed Penguins. Visitors make their way through tunnels to hides, then climb the hill above the beach for a glimpse of these rare birds. We were lucky to see six Yellow-eyes, four NZ fur seals, and a couple of Little Blue penguins in nest boxes. Diana and John took us out for dinner to the Lone Star which was a treat, and the staff brought out a candle in a dessert and everyone sang me Happy Birthday. On Day 12 we made a long road trip, 700km from Dunedin to Picton. It was an epic ten hours. We couldn’t leave Dunedin without a couple of cinnamon scrolls from Everyday Gourmet, which were the best I have ever tasted. We had to cut back our stops on the drive as it was lengthening the day. We settled on the Moeraki boulders, Rainbow Confectionary in Oamaru, and the Cookie Time store in Templeton. We spent the night in Picton. The following morning it was clear, calm and cool. We spent the entire ferry crossing outside and the Strait was like a lake. We were sad to see the South Island receding into the distance. Once we hit the North Island it was straight home. We had enjoyed a lot of quality time together and worn ourselves out. All the boys required a trip to the Doctor for antibiotics for chest or sinus infections but this was a small price to pay for what they had experienced.

We continue to try and make Rory’s life normal but it’s impossible to shut the door on the late effects of cancer or its treatment. Rory (and I) still spend a lot of time at the hospital and seeing specialists. The monitoring which provides the greatest level of anxiety is Rory’s annual MRI which rolls around each October. As Rory is now past the five year mark we are looking for secondary cancer, and for changes in the blood vessels in Rory’s brain as a result of radiotherapy. We hold our breath while we wait for the results. We were thrilled to get an email from Dr Stephen saying it was all clear. Unfortunately I think he had a reaction to the contrast which is given via the IV line. His face, neck and scalp swelled and he broke out in red hives. This took a week to clear. His hearing continues to be unstable. In mid-September he lost the majority of the hearing in his right ear suddenly, complaining “it feels blocked”. This was a big blow as his right ear has always been his best ear and stable since the end of treatment. He was given a course of steroids and anti-viral medication. He has recovered about half the hearing he lost. This has left Rory moderately-severely deaf in both ears (depending on the frequency). His hearing aids have been adjusted. The Audiologist ran a new test which indicated there may be a problem with the nerve pathway between the right ear and his brain. This needs further investigation. Rory’s hearing is now under the management of Dr Steventon, an Ear Nose and Throat Specialist at Taranaki Base Hospital, and he will be seen every six months. There is no way of knowing what will happen with his hearing in the future. He recently received new molds to try and reduce the amount of friction inside his ears. I have joined the Parents of Deaf Children Taranaki in an effort to better support Rory with his hearing issues. He is also receiving support from Mark a Deaf Advisor from the Ministry of Education/Van Asch who visits Rory in the classroom. He has taken over from Anne Ferne who has seen Rory for the last three years. Rory’s endocrine/hormone issues are managed by specialists from Greenland in Auckland. He is switching to a three-monthly Lucrine injection to continue to delay puberty. His thyroid ‘get up and go’ tablets are still required on a daily basis. Recent blood tests have shown Rory’s cortisol level is low which will require further investigation. He will be switching to a new type of growth hormone in the next few months as the government is now funding a different drug. There were a couple of out of the blue incidents. Rory took a soccer ball to the face at school during a game of lunchtime soccer which resulted in intermittent nose bleeds for a couple of weeks, and the skin on his outer ears became sore and raw. The Doctor told us it was due to radiotherapy which is the equivalent of “a lifetime of sun damage”. It has healed but the skin may need to be removed, and he has an appointment with a surgeon in the next couple of weeks. His teacher Mrs K, the Special Needs Education Co-ordinator (SENCO) Mrs M-S, and I continue to support his learning. He has started Jungle Memory, a computer programme, and a life-skills based learning programme six hours a week. He also continues to attend Clever Kids tuition for numeracy. Rory finally had his physiotherapy assessment at the Hospital. He has been on the semi-urgent waiting list since February. Jane the Physio is writing a report of her findings, with recommendations for how to proceed. This will require follow-up appointments. There was good news in that he will be able to get the orthotics for his shoes via the Orthopedic Department at the Hospital. Rory likes being active and has been busy over the past few months. His soccer team had their first win of the season against Opunake (3-1) and took part in a junior tournament run by Central Football. The Inglewood Football Club had their junior break up and everyone enjoyed the challenge of the parents versus kids game. Rory completed his school cross country, still not managing to run the whole course without stopping. He has enjoyed the two activities organised by the Halberg Trust and Parafed Taranaki; indoor rock climbing and sailing on the Waitara River. Rory made it to the top of the climbing wall and not to be left out Colt gave it a turn too. The Sunday morning was lovely for sailing. The boat ramp was busy with people out and about fishing, boating and white-baiting. Rory was so warm and relaxed in the sail boat he almost fell asleep. A reporter from the Taranaki Daily News was there and a smiling Rory featured on page 3 the following day. Rory’s school got behind Odd Shoe Day to raise funds for Camp Quality. We received a letter saying there was no room for Rory at Camp Quality in 2015 which was not unexpected. However to Rory’s delight we received a phone call two weeks ago to say some children had pulled out so there is room if he wants to attend. He absolutely does! Rory has a girlfriend, Emily. He bought her a present back from the South Island, and we have been proud of how he has been helping her out at Tech. He came home from school the other day with a small hand crafted stuffed green rabbit which she had given him. I have joined the Committee for the Taranaki branch of the Child Cancer Foundation to offer my support.

Sam grows in front of my eyes. He is now taller and broader than I am, and becoming more capable and independent. One night he even organised to go out for pizza and a movie with his mate Jack and three girls from his school. Although being a teenager he often asks the dumbest questions, and needs my help for the most basic things. His teachers continue to say he needs to articulate better what he thinks and knows, the devil is in the detail. Sam attends monthly Canteen Taranaki Committee meetings, and went to Winter camp at Tongariro one weekend where he loves snow-boarding. He, Sean and Rory collected donations for Canteen, and sold bandanas, in Stratford during their annual appeal week. His soccer team played hard all season, and at the end I watched a thrilling game against New Plymouth Boys High School. Although they lost 9-3 they got the first points on the board and NPBHS had only had 4 goals scored against them all season. Sam’s team was too good during the parents versus kids game at the break up and parents lost for the first time, 3-1. Sean wants me to make note he scored the first goal in the first two minutes of the game. Sam and his mates Taylor, Kieran and Izaac were chosen for the Inglewood High School 1st XI and took part in a week long national tournament at Karo Park. They managed some wins and finished 21/26. Even though the season has finished Sam and three of his friends are attending a Development Squad organised by Central Football once per week. Sam also refereed a 7-aside soccer tournament for intermediate students in the Inglewood Cluster last month. He enjoyed the Get To Go outdoors challenge at Lake Rotomanu, and playing social basketball with his friends during winter. Sam keeps really good health although he has given us some concern over the past few months with the occasional headache severe enough to cause him to vomit. I am monitoring it, and wonder if he is suffering from migraines as I do often during pressured times.

Colt is our lovely little man. I can’t believe he will be 4 in December. It’s hard to remember when he wasn’t in our lives. He has settled into the Rata Room (big kids) at Inglewood Community Childcare. He spends a lot of his day with his best friend Neo. They both enjoy the sandpit, physical play, water play, and building with the Mobilo. They often come to the fence to wave goodbye when I drive down the drive way. This month they have both had their first big boys play date, spending 1 ½ hours at the others house without mum. Neo had his 4th birthday in September so Colt got his first birthday invitation but unfortunately we were away in the South Island so had to make a special trip over before we went. Colt and Rory got swept up in the Little Shops craze from New World and spent a lot of time playing shops together.

Our family adventures have become legendary. We are always looking for some where new to explore, and for the next challenge. I spent a night in Hamilton for work so everyone came with me. We had a walk around Lake Rotoroa in the centre of Hamilton, and spent the following morning at the Farmers Market at Tamahere. The mussel fritters, macademia brittle and Hungarian twist hit the spot! We bought Colt a wooden bow which came with a leather quiver to to hold his arrows which he fell in love with. One rainy day we walked around Opunake Lake and along the cliff, eating fish and chips for lunch out of newspaper. We took a short tramp to Boars Head Mine in the Kaitake Range. We discovered a new waterfall and mine shaft, exploring a short way in using our cellphones as torches. We spent a little time looking in the stream and picking up rocks in the hope of finding gold. For the first time we tramped the track from Pukearhue to Mt Messenger (11 ½ km, 6 hours) with Sam’s friend Tarn. There was a NZ fur seal on the beach, and a flock of 14 NZ pigeon flew over us along Waipingao Stream. The clematis was flowering. It was a steady climb to Waipingao Trig where we had lunch, and then up again to Mt Messenger trig. It was hot on the ridges in the sun but there were great views. Sean, Sam Colt and I went on an expedition to find the crash site of an Airspeed Oxford Plane which had gone down in 1942 in heavy cloud during a training run over the sea. The three month search failed to find the plane. It was finally found by a Forest Service goat hunter in 1974 with the bodies of the four men. We tramped two hours along an old hunters track to see the wreckage and it was a sombre place. On the way back we detoured to see the pretty Mangorei Falls. We have made a couple of trips to Whitecliffs. The first to collect the bat recorders Sean put out when he was working up there, and the second to look for evidence of seabirds which may have been responsible for the unusual noises which were recorded. Seabirds have not been detected on the mainland at Whitecliffs for 50+ years. One Saturday we joined a Forest and Bird Trip to Tom and Dons bush reserve in Okato. We collected seedlings in the bush and potted them for growing on and replanting on the bare stream sides. It was lovely to see numerous NZ pigeon and Tui.

We were lucky to join the Rotokare Scenic Reserve Trust on their biennial road trip. We all clambered on a bus and drove north to Te Awamutu. Our destination was Sanctuary Mountain Maungatautari We were guided around the wetland and southern enclosure where we saw two Takahe. The bush walk led to a viewing tower which reached high up into the canopy. We took a one hour ‘break’ to Arapuni where we explored the 152m long suspension bridge (54m high). It was built in 1925 and flexed as you walked along it. We returned to Maungatautari for a pot luck dinner then went on a night tour to see Sirocco the kakapo. We walked into the bush along a lighted path to a recreation of Richard Henrys hut, complete with the conservationist himself! We were able to spend half an hour with Sirocco who was in a glass enclosure. There were log perches close to the glass so he could get up to the visitors. He did a dance with Colt and eye-balled Rory. Diedre the ranger showed us kakapo poo and feathers. On our walk back it was very dark and we saw glow worms ‘stars’ in the banks. On the Sunday we were guided around Waiwhakareke Restoration project in Hamilton by Professor Clarkson. One drizzling Sunday afternoon we joined some of the staff at Shell Todd Oil Services on a river and beach clean-up at Te Henui as part of Keep NZ Beautiful Week. We collected a couple of big bags of rubbish and recycling, including 8 tennis balls. Seeing the trailer load of rubbish, and the hot pizzas, at the end made getting soggy worthwhile. We have been waiting for a long-weekend to make an overnight trip to Trains Hut in Whanganui National Park, and this weekend we got our chance. We drove south to Waitotara, then up Waitotara Valley Road, one of the longest no exit roads in New Zealand. The Trains track (DOC) is a 12km long back country track which follows the Waitotara River, through farmland, scrub and forest. There were two high mesh swing bridges to cross which challenged my fear of heights, as did the track which sits on high ledges above the river and skirts side gorges. There were plenty of feral goats. Trains Hut is a comfortable modern 8-bunk hut with a pot belly stove. We had the place to ourselves apart from a possum tasting the block of soap on the sink outside at 1am. In the evening Sean detected long-tailed bats on the recorder, and we saw and heard NI Robin and Tomtit. On our way out yesterday morning we stopped at the beautiful Te Rere o Haupa Falls and looked for fossils in the caves and rocks.

Those we love, our family and friends, round out our lives. Sean and I had dinner with the girls and their partners (no kids!) at the Black Harp to support each other as some of us were going through difficult times. We did a firewood run at Kaponga with Uncle Guy and the kids when their stock ran low. Sam and Rory spent their regular day with Nana in the holidays going to a movie, eating pizza and visiting the library. Rory enjoyed staying a night at Nana and Poppas and helping Nana in the New Plymouth Hospice shop. On Fathers Day we had a family lunch for the three Dads (Poppa, Sean, Guy) and walked the Huatoki walkway from the top to the bottom. It was cool to see threatened king fern and swamp maire, and play on the new playground. Poppa had an operation on his back so Sam made peanut brownies and we called in to the hospital to visit him and make sure he was ok. Sean and I celebrated our 16 year anniversary. Where has the time gone! Happy Birthday to our very special Grannie and Nana – we love you heaps.