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16, Mar, 2014

March 2014 update - 5 year anniversary


Tomorrow, the 17th of March 2014, is a momentous milestone in our lives.  Thinking about it brings tears to my eyes and a lump in my throat.  I don’t know whether to cry from joy, relief or heart break.  I don’t know whether to celebrate or commiserate.  On the 17th of March 2009 our almost-7 year old son Rory was diagnosed with a large tumor in his brain.  I don’t remember hearing the word ‘cancer’ until much later.  Our world disintegrated in a room on the Children’s Ward at Whangarei Hospital.  It was only when we got to Starship a few hours later we understood just how bad it was; there were two tumors, and one was likely inoperable.  The Doctors suspected it was medulloblastoma, and Rory was classified as ‘high-risk’ of failure because it had spread.  The likelihood of him surviving the next five years was 60-65%.  We have taken it one day at a time, sometimes one hour at a time.  We have focused on one word ‘move’.  It is the philosophy which under pins our lives.  And tomorrow Rory will be here, free of medulloblastoma.  He will be considered a survivor.  His chance of relapse is very small.  It is almost overwhelming.  The first words I spoke to the Doctors in Whangarei were “How long?” as I expected him to die.  The day he was diagnosed was the worst day of my life.  Cancer is a horrible disease.  In a backpack Rory must carry the late effects of cancer and its treatment for the rest of his life.  We shake this off and focus on the positive.  Rory is here.  I almost can’t believe it, and words cannot describe the wonderousness of this.  There are children who are not; Mia, Carrie, and Reuban.  Tomorrow we will remember them as we hug Rory tight, and begin the next stage of our journey with him.

Rory started at Inglewood Primary School as a Year 7 in Room 14.  He has a male teacher, Mr R, for the first time.  He has been enjoying Technology which is done at Inglewood High once per week.  I think it has something to do with the fact Cooking was his first elective!  He has been learning the ropes as an Intermediate, and a REACH Rep.  Inglewood Primary was a pioneer school for the REACH programme, and Rory helped organise the 10 year anniversary celebration this month.  There was singing, speeches, and cake-cutting.  In the playground the children formed the letters REACH and held coloured card up over their heads as a plane flew over to take photographs.  The finale was the release of balloons, butterflies and bubbles.  One day after school Rory is on gate duty, and one afternoon he attends Clever Kids for maths tuition.  He has been swimming two nights a week at the Inglewood Pool but has now finished for the season.  To our surprise and disappointment was Rory was subject to a bullying incident at school, the first in five years.  One of the intermediate boys has started a gang and a couple of its members kicked, shoved and punched Rory when he came over to talk.  The school interviewed the students involved and they apologised.  I wonder if bullying is going to become an issue as Rory enters his teenage years where the gap between the ‘it’ kids and ‘everyone else’ widens.  It has been a challenge for Rory to learn the ropes of being an intermediate.  As Mr R said it is ‘rarely bums on seats’.  There is always something happening.  Constant change pust a strain on Rory’s short-term memory, and he has been very forgetful.  One day he lost his $4,000 hearing aids in the High School garden after school.  We were very lucky someone found them and handed them in to the office.  We are thankful Rory’s health is relatively stable.  He is now taking 75mcg of Thyroxine daily to improve his energy levels, and well as the growth hormones.  Unbeknownst to anyone he sprained his left ankle at Camp Quality in January.  It swelled, became quite sore, and required physiotherapy.  This brought the issue of Rory’s mobilising to the forefront.  Surgery and chemotherapy left Rory with poor balance and co-ordination, reduced strength and control on his left side, and foot drop in his left foot.  He cannot walk ‘normally’, so his body had to adapt.  However, walking and tramping over the last few years has put pressure on his lower limbs.  His feet now turn outwards, and his gait is wide and uneven.  We took him to a Podiatrist who diagnosed severe over-pronation.  His feet are maxed out, and he has no arches left.  She recommended more supportive sports shoes and orthotic inserts which we are in the process of getting.  We hope this will be enough and he won’t require leg braces in the future.  We have to take the late effects as they appear and fight the medical system to get Rory the best treatment possible to ensure he has quality of life.  We had a lovely surprise this week when I bumped into Carole Long at the NZ Dunes Trust Conference in New Plymouth.  Carole’s son Mike was Rory’s companion for the first three years he attended Camp Quality.  I thanked Carole very much for what Mike did for Rory and when we hugged there were a few tears.  I brought Carole out to meet Rory when I left.  Rory is looking forward to heading off to Intermediate camp this week, Sean is attending as parent help, and his birthday on the 27th.  He is having a combined birthday with his good friend Ethan as they were both born on the same day.  Today is a special day too.  We would like to wish a big Happy 12th Birthday to Kody Johnston in Dargaville!

As much as I don’t like to admit it as a 14 year old Sam is now taller than me.  He is in Year 10 at Inglewood High School this year.  At this goal setting interview he set the following targets for the year; completing the Year 10 Junior Diploma with Distinction, becoming a Taranaki Football Rep (U15s), working towards the Duke of Edinburgh awards, serving on the Taranaki Canteen Committee, and taking part in the Naki Run Amok with Sean.  Sports, Canteen, and his mates are key features of his life.  He has been in TSSSA competitions for Beach Volleyball, Lawn Bowls, and Rogaine, and is signed up for the Triathlon and Orienteering.  He continues to play Futsal on a Sunday afternoon as often as he can.  He attends the monthly Canteen meetings, and went on a bus to Waikanae for Summer Camp.  He was kept busy during the Mexican themed camp with rock climbing, swimming, team building, training, and a bonfire on the beach.  He also wrote an article for the Canteen national newsletter.  Happy 14th Birthday to Sam’s good friend Campbell Foreman.

Colt seems to be everyone in our immediate family’s baby, although he is starting to resist if you kiss and cuddle him too much as a boisterous 3 ¼ year old.  He is coming out of his shell at crèche, interacting with the other children and developing a circle of friends in the Kowahi Room (Neo, Maxwell and Tyrese).  He is going off in the mornings when I leave to participate in many of the neat activities on offer; painting, playdough, collage, water play, construction in the sandpit, and physical activity i.e. jumping onto the mats off the outdoor boxes.  I finally made the decision to give up Playcentre.  It was difficult but Colt and I needed to have a day where we could be free spirits.  We have found plenty to fill in our Mondays; accompanying Nana on 9 holes of golf at Kaitake (Colt and I held the flags and retrieved balls), exploring Pukeariki museum, taking books out of the public library, swimming at the Aquatic Centre, playing at playgrounds, looking at animals at the Zoo, and picking up Rory from school with Colt on his balance bike.  We have been enjoying the quality time at Colts level.

We have been making the most of the dry summer to continue exploring and discovering.  We went on a Forest and Bird trip to Mahoenui Scientific Reserve in the southern King Country.  Entry to the reserve is by Permit from DoC as it is the stronghold of the Mahoenui Giant Weta, The weta live in gorse, so it is the only Reserve in the country where gorse is protected.  Accompanied by a DoC Ranger we spent two hours searching for weta in the hot sun in prickly gorse bushes wearing long leather gloves.  Sean managed to find a male and the larger female which we were able to hold and photograph.  We continued on our journey up the Mangatoki Valley to Waitanguru Falls.  We watched from the viewing platform while Sam took a dip in the pool at the bottom.  Our destination at the top of the valley was Ngapaenga where my grandparents farmed for a few years before the Second World War.  It was like stepping back in time when we drove up their driveway.  An added bonus was the discovery of Hairy Feet www.hairyfeetwaitomo.co.nz the stunning farm location at Mangaotaki Rocks in Piopio, where the troll and campfire scenes in "The Hobbit: An Unexpected Journey" were filmed.  You can take a guided tour of the film locations.

I helped organise a community field trip to Pipirki in South Taranaki for World Wetlands Day.  It was well attended with guest speakers, a guided walk around the wetland, and a sausage sizzle.  We attended Paepae in the Park in Patea for Waitangi Day.  It was hot and sunny and we enjoyed sitting in the park listening to reggae band Tomorrow People after we had perused the stalls.  A quick dip at the Hawera Aquatic Centre on the way home was necessary to cool off.  We have made our usual pilgrimage to Whitecliffs, accompanied by friends Taylor and Ethan.  The boys enjoyed making creations with the dried pampas curls, a picnic lunch, and a swim at the beach at low tide on the return trip to the van.  We walked around Ratapihipihi Reserve in New Plymouth and the forest floor was littered with tawa berries, and we managed to spot an eel in the creek.  One evening we wandered around Americarna while it was in Inglewood admiring the awesome American cards, watching a street performer, and finishing with fish and chips.  Another evening was spent at Rory’s good friend Alana’s mothers 40th birthday and their house warming – Happy Birthday Kim!  Sean and I attempted to climb to the summit of Mt Taranaki with a group of Taranaki Regional Council staff.  We took a different track up the Razorback and alongside Humphries Castle and there was a great view of these features in spite of the fog.  Unfortunately one of our party felt unwell about 2/3 way up so Sean and I took her back down the mountain.  We had hoped to make it to the top at a later date but the first snowfall of the year, and cooler nights, have made conditions near the summit icy so we might have to wait until next summer.

We have spent two overnighters in the wild.  We spent a night at Rex’s hut at Mangamingi, and there was plenty to occupy everyone; shooting feral goats, catching cicadas and large bush dragonflies, picking blackberries, and general camp duties i.e. cooking.  It was lovely to have dinner outside as the sun went down, and capture a pink sunrise over Mount Taranaki with the moon in view.  We set the bat recorder up and captured the first record of a Long-tailed bat for the site (their flight/passovers are recorded).  We even had a Kahu/Harrier raid the goat meat which Sean hung in a tree to cool.  During Taranaki Anniversary weekend we spent a night at Pouiatoa Forest in the Goodie’s Hut owned by the Schumachers.  It was a bumpy 4WD ride in on a dusty track.  The Vintage Tractor Club were having lunch at the hut when we arrived, complete with their tractors, which was a sight for the boys.  Again there was no shortage of activities; looking for a lost trap, exploring a long tunnel under a tree, hunting feral goats, catching singing crickets, setting the eel nets with a rabbit Sean shot as bait, and setting up the bat box.  Unfortunately we didn’t get any recordings but we got two large long-finned eels in the traps which we let go.  We walked up a spur onto the ridge top in the morning.  It was like being in a forest on the top of the world.  Colt walked along the track chattering and pointing out all which caught his eye.  Sean and Sam were lucky enough to see two NI Robin when they ducked down to locate a feral goat.  It was a hairy drive out from the hut as the Purangi Trail Ride was on and there were many motor bike riders coming towards us.

Sean, Colt and I had a treat this week when we participated in the release of Whio - Blue Duck into the Manganui River in Egmont National Park with DoC.  Eight juvenile ducks raised in captivity in Christchurch made the journey north in cardboard cat boxes, first by plane, then truck, then carried in by primary school pupils.  Sean and Colt were able to release a whio together.  The whio paddled into the middle of the river, riding the rapids, and slowly made their way upstream.  In places they hopped out onto the rocks which were in their paths and stretched their wings.  They blended in so well you almost couldn’t see them.

We reach out to you all this month as we look back over the last five years.  We send our love and hugs, and we say thank you.  You have given to us in all manner of ways so we could make it through, and so we could give Rory an exceptional life.  Your contribution has been invaluable.  We hope you continue with us on our journey.  Lots of love Leigh, Sean, Sam, Rory and Colt xox