Rory Gardiner's Webpage

19, Dec, 2012

December 2012 Update

We would like to wish those we love, our family and friends, those who have supported us on Rory’s journey and who follow his story, a very Merry Christmas

We hope it is full of all the things which make Christmas great; love, laughter, family, great food, and of course a few presents.  We wish you all good health, love and adventure in 2013.  Rory asked me at the kitchen sink the other night “does radiotherapy cause brain damage?”  He had been watching the news article on the television about the NZ woman who went on the run in the UK with her 7 year old son who had a brain tumor.  He had the same type of cancer as Rory, and she didn’t want him to have radiotherapy or chemotherapy because it would ‘fry his brain’.  I said to Rory “Yes it damages brain cells but you are not brain damaged, you are just ‘different’ to how you would have been.  We did what we did to keep you alive and as healthy as possible based on the Doctor’s advice.  You are still with us and you are still you”.  I want to acknowledge the two children we have lost this year, Carrie Allen, and Reuben Henry-Weinburg.  Reuben passed away two weeks ago.  He had secondary cancer caused by treatment for medulloblastoma 6+ years ago.  Reuben was 17.  Carrie and Reuben, and their families, fought a tough battle against cancer and couldn’t win.  It is heart breaking, but our lives are so much better for having known them.  They teach us the most important lesson of all .... ‘make the most of every day in 2013, life is precious’.

We have been so busy I haven’t had time to update Rory’s website, but as Christmas has marched ever closer the job has made it to the top of my to-do list.  We are fortunate Rory has remained in remission and kept in generally good health.  An MRI at Taranaki Base Hospital in October showed his brain was clear of cancer.  He is due to have his next scan in April.  Dr Stephen called to tell me the news and my heart nearly stopped when I heard his voice on the phone.  Stephen usually emails so to receive a call was a shock, and my unconscious reaction was in anticipation of the worst news.  Thankfully it wasn’t.  We suspect Rory had another brain bleed during the first week in November.  One day he was completely out of character; sleepy, confused, distressed, cranky and unable to concentrate on anything.  He had a sleep in the middle of the day.  We monitored him closely but there is little we can do for minor bleeds.  Rory has had a battery of blood tests.  He may need to increase the level of growth hormone he receives due to his increasing height and weight (although he is the shortest, palest and baldest lad in the kapa haka group).  The tests showed one of his thyroid hormones is in decline.  It is not quite at the bottom but Dr Craig the Endocrinologist has started him on low dose thyroid hormone replacement (one tablet every 2 days).  Hopefully this will increase his energy levels.  There are big changes ahead for Rory in 2013.  The Ministry of Education have stuck to their decision that he doesn’t need a Teacher Aide so he will be going it alone.  He also loses the support of Sam at school as Sam is moving on to High School, and he is changing classes.  I met with Rory’s new Teachers yesterday (and the Special Needs Co-ordinator and his current Teacher Aide) to brief them and discuss how we are going to teach him in 2013.  We are currently updating his IEP (Individual Education Plan).  Rory has finished at Clever Kids as we couldn’t continue to fund his lessons on a weekly basis.  Rory has been keeping busy.  He brought home a certificate for coming 3rd in the Year 5 speech finals.  He is now swimming with the Inglewood Swimming Club two nights a week, receiving lessons to improve his technique and stamina.  Rory and Sam have joined East End Surf Lifesaving Club in New Plymouth and are participating in Junior Surf on a Sunday morning.  Sam is a Cadet and Rory is a Rookie.  They are learning how to do beach flags, beach sprints and relay, wade successfully and catch waves.  Sam is working on his sea swimming and learning board skills.  He was thrilled to paddle out 500m offshore with Uncle Guy (Cadets Coach) on Sunday morning.  Sean joined him for a repeat paddle, and has been supporting Rory on the beach.  The Gardiner boys entered the annual Child Cancer Foundation (CFF) versus Canteen 10 Pin Bowling challenge.  I opted out, volunteering to look after Colt.  Rory got a certificate for most improved player, Sam for best score (CCF) and Sean for the most strikes.  The only award they didn’t win was for worst player (only because I didn’t compete!).  The event gave us the opportunity to meet Kathryn, the new Support Worker for the Taranaki branch of CCF, and Lauree who manages the Taranaki branch of Canteen.  Over the past two months Sam has been transitioning from being a CCF Sib (Sibling) to a member of Canteen.  We had a visit from Mike Long and his wife Kirsty.  Mike has been Rory’s (much adored) companion at Camp Quality for the last two years. Both Rory and Mike have been accepted for CQ 2013 in Hastings (their 3rd time).  It was great to see Mike and Kirsty, catch up on their news, hear Mike and Rory tell stories about past camps, and plan for next month.  The theme is Movie Stars and Rory has chosen Indiana Jones.  I will take a photo and post it once his costume is sorted.  Rory continues to be the recipient of people’s stares, and comments about his appearance but also wonderful acts of warmth and generosity.  We were in the toy section in the Farmers Store debating which pack of Lego Santa was going to bring.  Rory was set on a small Star Wars pack and I was trying to convince him to try something new.  A woman came up to us and offered to buy him the pack.  I said thank you but she didn’t have to.  She said she wanted to as she had had cancer and knew how brave Rory would have had to have been.  I had a chat to her for a while and then the two of them walked up to the counter to make the purchase.  Rory came back thrilled with his gift.  I wish I had gotten her name.

The big boys have been busy together.  At the end of the last school holidays they made pizza with Sandy at Hells Pizza which they really enjoy.  Sandy and her generous customers gave Rory $168 of donations which has paid for his swimming lessons and Junior surf.  They take turns with me on their bikes coming for a run 4-5 mornings a week.  We have a 10km loop which Rory can now complete if we go the easier way.  It takes a lot of effort for him to ride a bike so regulating his speed, steering, and working hard on an incline is a struggle.  We haven’t been getting out as much as I would have liked since my last blog as we have been extra busy and there has been quite a lot of illness in our household.  The boys participated in the school Athletics Day and came home with sunburnt with sore feet.  Sam made it to the Inglewood clusters for sprints and high jump but didn’t place.  They went to a Halloween Light Party with their friends at the Mamaku Centre in Inglewood, and we attended the CCF Christmas Party at Ngamotu Beach in New Plymouth as a family.  The boys had a fun couple of hours on the beach, the bouncy castle, completing a rope maze, having a ride on a horse and in a Mustang, enjoying a bbq lunch, and receiving presents from Santa.  CCF do a really good job of supporting families with children who have cancer in the mix.  I attended the boys Parent-Teacher interviews.  Both boys have made gains this year which was pleasing, and I am told they are a pleasure to have in the classroom.  However, Sam’s writing/spelling is letting him down still, and Rory needs to persevere with numeracy (I think indefinitely).  They both attended the 100s club bbq last week at school for achieving 100 REACH points on the school programme.  I attended the Inglewood Primary School final school assembly last night.  Sam and Rory performed with the kapa haka group.  Sam was nominated for the Excellence Award and the Award for Maori Leadership.  They completed a half day at school today and finished for the year at midday.

Sam has had the busiest time of any of us.  He attended Sibs (Siblings) Camp in Wellington run by the Central Districts region of CCF.  He was treated to a flight to Wellington, and a night sleeping in the Zoo.  His time was filled with; an Amazing Race, a tour of Te Papa, building and sharing enrichment toys with the monkeys, and making new friends whose siblings also have cancer.  He spent a morning at the Naki Nitro Karts with the other Taranaki Canteeners.  He raced the fast racer karts around the 140m of indoor track.  They replaced the energy they had burnt with lunch at Burger King.  He spent a week on Intermediate camp at Te Wera in eastern Taranaki.  I went along as parent help while Sean held down the fort at home.  I was responsible for a group of nine students all week (including Sam) and led them through activities such as; cooking on hobo stoves, flying fox, night line/blind trail, ball games, team building, orienteering, a confidence course, water slide, and on duties such as working in the kitchen.  One day we went to a neighbouring farmer’s dam and were kept busy kayaking, building stretchers and bivouacs, building and racing rafts, and trying our hands at archery. Sam dropped his wet undies at the end of the day after he had gotten changed.  I found them and embarrassed him in front of everyone.  It has become a long standing joke which resulted in two skits, one on the Thursday night during the camp show and the other during the Year 8 Dinner Dance entertainment.  On Friday most of us participated in a mud run in a farm drain on the edge of a wetland.  It was great fun.  We had to wash off in a roadside culvert as one of the adults (who shall go unnamed) drained most of the water from the camp (40,000 litres) by leaving the water slide tap on.  I tried to inject a little environmental education into camp by trapping and finding things to show the children, and offering chocolate bars as incentives.  A highlight for me was seeing their faces and hearing their exclamations when they saw the (large) banded kokopu in the bucket at breakfast one morning and heard it was their whitebait fritter (if they hadn’t eaten it).  I managed to get out for two runs and a bike ride to nearby Makahu historic rock tunnel (1907) before breakfast accompanied by either the students, a parent or one of the teachers.  We arrived home on the Friday afternoon tired, sunburnt and dirty but elated and happy.  Sam received the Student of the Week award for being exceptional on camp and encouraging others to do the same.  Attending Intermediate camp with Sam was one of the highlights of my year, along with seeing Colt walk and run for the first time, and seeing Rory ride on two wheels again.

Sam had his last day as an Intermediate student today, and starts Inglewood High in 2013.  He has been to the High School orientation day, and has a great group of mates to go forward with; Taylor, Kieran, Richard, Tarn, Kalind and Jordan.  They are starting to hang out together in their spare time a lot more.  Sam also has a new girlfriend, Flo.  Flo received a sports award at prize giving last night.  On the first day in December Sam turned 13.  He was up early, pinched and punched us, and was keen to rip into his cards and presents.  He celebrated with a paintball game at Platoon with his friends, Sean, Uncle Jason and Uncle Arron.  They came home two hours, and 200+ rounds later a little bruised and overflowing testosterone.  They had a great time.  All the lads stayed the night, sleeping in the lounge watching movies and playing the Xbox.  We were joined at tea by Nana and Poppa, Uncle Guy and cousins Sacha and Corbyn.  Auntie Wendy and Mikayla kept Colt and I company and helped us out in the afternoon.  When the boys got up on Sunday morning some were sporting pen beards and moustaches.  Sam has kept active in spite of a sinus and chest infection and one round of the tummy bug.  He spent a day in the bush with Sean at Pouiatoa helping with work for ETET (East Taranaki Environment Trust).  He and Sean serviced the possum monitoring lines.  They were lucky enough to see and hear Long-tailed cuckoo and Falcon.  He is working on his 200m certificate for surf lifesaving, completing his pool and sea swim.  He and several of the Intermediates spent a day at Topec learning about River Safety, and he had fun at the Intermediate Big Day Out.  His growing up was never more evident to Sean and I than at the Year 8 Dinner Dance held by Inglewood Primary.  The students have been practising old fashioned dances all year.  It was formal attire with the boys wearing dress pants, shirts and ties, and the girls in pretty dresses and heels.  Sean and I went to a parent’s dance practice prior to the night.  Everything was new to Sean and I took time to get it right even though I remembered how to do the steps (I do not have two left feet!).  The Dinner Dance started at 5.30pm at the Town Hall and ran until almost 11pm.  We enjoyed dinner, had photos, and watched the children receive their leaving certificates.  They left the Town Hall, lined up and all walked in to commence the dancing.  The students were all smart, shiny, and full of energy and anticipation for the future.  We enjoyed hitting the dance floor, dancing with our partners, our children, and their peers.

Colt is turning 2 tomorrow.  He is our blondini, cute as a button (I’ve lost count of the number of times I’ve been stopped in the supermarket), cheeky, bossy, and a chatterbox.  He loves being busy, particularly outside.  He now weighs 12.5kg and is 86.5cm tall.  He hasn’t had a very good run health-wise since my last blog.  He has had a temperature regularly, reaching 39+oC a couple of times, accompanied by unsettled nights.  He has had an ear infection, tonsillitis and two tummy bugs.  This is in spite of my liberal use of soap and water and detol.  I have also succumbed three times, and Rory twice.  He had another pallid breath holding spell in mid-November.  He slipped down between the arm chairs and banged his head.  He didn’t breathe for 30 seconds, and neither Sean or I could find a pulse.  I was dialling 111 when he came to, but it took Colt two more attempts before he was fully conscious.  He has seen the Paediatrician again and has been referred for further investigation in early 2013 because his type of breath holding spells are abnormal.  We need to rule out there isn’t an underlying medical cause.  He spent most of Sunday at Taranaki Base Hospital.  He was vomiting last Thursday and hadn’t returned to his normal self, eating and drinking little.  On Sunday he was sick again but also silent, floppy, pale, and sleepy.  At the Hospital they gave him IV fluids and rehydration and he was improving enough to go home by tea time.  He is a lot better today.  In spite of all this he develops every day and thrives on life.  He continues to split his time between his family, Educator Sharon from Porse and Nana Honnor (our regular back up).  He and I have had fun at Playcentre.  The highlights would be the new life-sized post box which he mails things into, and hides in, tucking his feet up and pulling the door closed behind him.  A sun themed day was busy as we had bubbles, slime, a paddling pool and the sprinkler, and he regularly explores the fort walking the planks of wood on his own.  We took part in an excursion to Egmont National Park where we walked the Nature Loop track.  Colt is starting to walk short distances on our tramps.  He has become part of the gang at Sharon’s in the company of Max and Cooper, Dee-anne, Sophie and Ella.  They go to music, on Nature Walk’s and attend development play groups with different themes such as junk construction.  Nana takes him out and about doing things she did with Guy and I as children; feeding the ducks at the park, swimming at the Aquatic Centre, playing in the McDonalds playground, walking around the Zoo, and taking him to Playcentre when I can’t.

It has been a while since we have been anywhere new on our adventures but we have repeated some of our old favourites; scootering the New Plymouth coastal walkway, walking the track around Lake Mangamahoe (where Sean and Rory went trout fishing), and making two trips up to Whitecliffs to complete the Waipingao loop.  The last time it was a hot sunny day and we were accompanied by Sam’s best mate Taylor.  It was lovely to see and hear Bellbird and California Quail in the bush.  All the boys had a swim on the trip back along the beach while Colt played in the rock pools.

Rory and I have been to a few gala days and found treasure to fill the Christmas stockings.  We all attended the NZ Tattoo and Art festival admiring work from artists all over the world.  The stadium was humming with the sound of over 100 needles tattooing.  Sean and I would have liked more work done but there wasn’t time.  We attempted the Stony River Loop track which runs across DoC and private land and found half the track closed and the bridge removed.  I have walked this track since I was a girl and was disappointed to find it in disrepair.  On the way home we stopped at AhuAhu Beach Road beach for a play.  Colt always finds the sensation of sand under his feet something of a shock and an oddity but delights running in and out of the waves.  We have caught up with the Girls and their families twice for lunch.  The last time we had a picnic at the Audrey Gale Reserve on the Waiwhakaiho River.  The kids swam in the river and kicked a ball around with the dads in the large grassed area.

We have celebrated several birthdays recently.  A big Happy Birthday to the following people; Alex Phillips (10), Nana Honnor (ageless), cousin Logan (13), Sam (13), cousin Mikayla (4), Sean (21 again), and Colt is turning 2 tomorrow.  It has been a pleasure to share your milestones.

To everyone reading this blog please stay safe over the festive season.  We hope to continue to share our lives with you in 2013.  Lots of love   Leigh, Sean, Sam, Rory and Colt xoxoxo