Rory Gardiner's Webpage

25, Nov, 2010

Thursday 25th November 2010

I’m sure we have all been following the Pike River coal mine disaster where 29 miners lost their lives this week.  My heart goes out to their families at this traumatic time.  I know what it feels like to be hit with a devastating bolt of lightning out of the blue, or ‘an act of God’ as someone described it to me.  Rory’s clear MRI, and the tragic loss of life on the West Coast, serve to remind me how lucky I am.  Rory remains with us, in remission, growing stronger, and tackling life head on.  Others are not so lucky.  Every week on the international medullo email group a child relapses and the parents are told there is no hope, or passes away.  Although I am relieved, overjoyed and infinitely grateful for Rory’s survivorship a certain amount of guilt comes with being dealt a good hand when you know others are suffering.  I try to do what I can to help and get on with living life the only way I know how, full on, so it hasn’t been wasted. 

We spent four days away in Auckland with Rory.  On the Monday Rory had a full Neuro-psychological evaluation with Dr Katherine.  This consisted of many five minute activities, with short breaks in between.  I waited next door in the Ronald McDonald Family Room.  Katherine gave me two long questionnaires to complete (200+ questions) seeking my opinion on Rory.  There was an identical set of forms for his Teacher/Teacher Aide.  Katherine and Rory started at 9.30am and went through till 1.15pm, with a half hour break in the middle.  Rory managed to get through all the work but was exhausted at the end of it.  On Tuesday afternoon he visited the Oncology clinic where he was weighed and measured, and an iv line put in his arm.  Blood was drawn for a range of tests.  Rory then had an MRI scan of his brain (without and with dye/contrast).  Sean went in with Rory as I couldn’t being pregnant.  It was a full day at Starship on Wednesday.  We were glad to return the large mountain buggy we borrowed from the Physiotherapy team to transport Rory, he no longer needs it.  Rory had his hearing tested at Audiology.  I was worried there had been a decline in his hearing.  Without his hearing aids he often misinterprets what is being said around him.  However his hearing hadn’t changed so it is likely an artefact of using/not using the hearing aids, and hearing/not hearing correctly.  Rory visited the Dentist who checked his teeth.  She took a set of x-rays of his teeth, and sent us to Radiology so he could have a surround x-ray of his whole mouth (shows adult teeth underneath).  There is a risk radiotherapy could have damaged his adult teeth, but we have to wait and see what eventuates.  The Dentist gave us some Tooth Mousse to strengthen his teeth.  Rory’s next appointment was with Dr Stephen, his Oncologist.  The first thing Sean and I always want to know when the door shuts is whether Rory’s MRI is clear, we only just get through the pleasantries of introduction.  The waiting makes us sick with worry.  Thankfully the result was a good one.  Rory’s blood results show he is slightly anaemic (a hang-over from chemo) and has low vitamin D (in spite of the yucky tasting supplements I have been making him take).  I will be discussing these results with the Endocrinologist next week.  We had a discussion about Rory’s lack of hair growth, and Stephen said to give it another year and see what pops up.  Rory is scheduled to return to Starship for his next MRI in March 2011.  Our final appointment was with Dr Katherine.  She took Rory aside for 20 minutes for three additional sub-tests.  She was able to give us preliminary results of the Neuro-psychological evauation, and a full report will follow.  Before he got cancer Rory was likely operating around high average.  He is now operating at low-average.  In some cognitive tasks he did well, but in others poorly.  This was expected as radiotherapy (and the neuro-surgery) results in greater damage to some cells in the brain, and some areas of the brain.  In a learning situation Rory is not learning all the information he should be, and later on is having difficulty extracting it.  He does a lot better when prompted or provided with cues/triggers.  Rory is struggling with more complex tasks.  He needs the steps written down to succeed, or concrete tools to determine an answer i.e. abacus, planning sheet for writing.  His biggest deficit appears to be in executive functioning (organising, and processing to producing a result).  This is most evident with his poor results in numeracy.  Some of the skills he needs can be taught, and reinforced.  It was a lot to digest and a little scary in terms of what it means for Rory’s future, but what we heard from Katherine is similar to what he have heard from other medullo parents.  We have to utilise the results of the evaluation to ensure Rory gets an equal opportunity to education, and the support mechanisms are in place so he can achieve.  I will continue to work closely with his school.  We also discussed a few issues with Katherine; Rory’s nightmares, re-classifying him at school, setting boundaries and breaking patterns of behaviour. 

We always try and make the most of our time in Auckland, by breaking up the stress, unpleasantness and monotony of the hospital, with fun activities and adventure.  On the drive north on Sunday we took a detour to Candyland just east of Taupiri.  The boy’s eyes were bugging out in the shop, and we bought bags/sticks of rock candy which only just lasted the trip.  When we arrived in Auckland we went straight to Butterfly Creek and Crocodile House.  The Manager, John Dowsett, organised a behind the scenes tour for Rory (and our family).  Brian, the Reptile Handler, took us up close to Scar, the largest croc (5m long, 600kg), and let the boys hold a three year old female alligator.  We all took our time in the Butterfly house admiring the large colourful butterflies, and the boys got to hold a juvenile possum in the farm area.  On Sunday night we caught up with Moneypenny (aka the lovely Lyn) for dinner at our ‘regular’ Japanese restaurant, Mt Fuji, at the top of Queen Street.  Naughty Lyn, one of Santa’s helpers, spoiled the boys with early Christmas pressies.  It was great to exchange news and spend time together.  On Monday Sean and Sam went off for the morning to look at ‘boys stuff’ while I stayed with Rory at Starship.  We all met back at Ronald McDonald House early in the afternoon.  Trudi and Kody Johnston drove down from Dargaville to see us.  It was lovely to see them, and Rory was thrilled to see Kody.  We spent the afternoon at Rainbows End, courtesy of the Child Cancer Foundation.  I didn’t ride any rides, playing tour guide instead, but Trudi was exceptionally brave (and very vocal) riding all the rides Sean and Sam did.  Sean’s ears are still ringing.  Kody stuck with Rory all afternoon (Rory can’t ride the rides with more violent movement).  It made me laugh to see Rory and Kody squabbling good-naturedly for possession of the steering wheel in a dogem car.  We had dinner at McDonalds and then parted ways.  Trudi and Kody stayed the night in Auckland so they could call in and see Finn, a girl from Kody and Rory’s class at Dargaville Primary, who had been in Starship Hospital due to a head injury from an accident with her calf.  Finn was discharged to a rehab facility before we could see her.  On Tuesday we drove out to Piha beach on Auckland’s west coast.  It was a hot sunny day in the mid-20s.  The black sand was hot so we had to make a run for it to the water’s edge.  We walked along the beach to Lion Rock and scrambled up it for a great view. 

Rory lost a tooth the night before we went to Auckland.  It is one of the middle front ones at the top, the other is loose.  He looks funny with a gap, a bit like a pirate!  He has been off school for most of this week sick (so I’ve been off work too).  We took him to Taranaki Base Hospital on Tuesday as we were concerned.  The Paediatrician said it was virus, but could be a precursor to pneumonia (which he had earlier in the year).  We went home with a script for antibiotics.  He was much worse on Wednesday; tired, with a high temperature, and an increased wet chesty cough, so he is now on antibiotics.  He is feeling better today but is still tired and chesty.  When Rory gets sick he often takes a long time to recover, or suffers from complications.  We are always hyper-vigilant. 

Sam spent last weekend at Sibling Camp in Otaki, organised by the Central Region of the Child Cancer Foundation.  He travelled down with Diane, the Taranaki Branch Support Worker.  He made friends with several boys his age whose brothers or sisters were diagnosed with cancer.  There were heaps of fun activities at camp; mud slide, horse riding, flying fox, water slide and swimming, rifle range, art activities (painting, making bead creations, plate smashing for a mosaic).  He came home tired but proudly wearing his new Super Sibs t-shirt. 

Sean and I attended parent teacher interviews at Inglewood Primary School with the boy’s teachers.  Sam’s teacher spoke highly of him, and he is doing well across the board.  In typical boy fashion the only thing he needs to work on is improving the quality of his writing.  He is doing well at maths but there is a strange ‘gap’ with geometry and measurement.  We think he may have missed these components of the curriculum due to the disruption in his schooling over the past couple of years.  His teacher sent home a book of exercises to help him catch up – he is thrilled.  The discussion with Rory’s teacher centred around his results, and how best to teach him next year i.e. which year level/class, best use of his Teacher Aides, and his strengths and weaknesses. 

I have less than a month to go until the baby’s due date.  He is getting bigger, and I am getting slower!  I have been having regular strong Braxton Hicks (training contractions).  We are trying to create a short list of our preferred names.  I’ve been back to the dentist for a temporary patch up job on the same back molar, which will have to be removed.  Having dental work at 36 weeks pregnant tipped up in a dental chair is not a pleasant experience.  I’m still working part-time at Taranaki Regional Council (TRC), enjoying it, and making headway into the backlog of work generated from a review of the Tree Trust, and the absence of a Co-ordinator.  Sean has been enjoying feral goat control for one of the eastern Taranaki landowners, and is planning his next tattoo for his birthday in a fortnight. 

Grannie Gardiner came to stay with us for three days while Grandad was away hunting in the South Island.  Fog at New Plymouth airport meant her short flight from Auckland turned into a detour to Wanganui with a bus ride north to Inglewood.  She arrived five hours late.  It was lovely to have her stay, and the boys enjoyed having their Grannie around.  We gave her a whirl wind tour of New Plymouth; morning tea at Nana and Poppa’s, a walk on the coastal walkway between the Wind Wand and Te Henui stream, a visit to Pukeariki (museum), a drive along the coast (Paritutu, Back Beach, Oakura), a walk in Pukeiti Gardens (famous for its rhododendrons), and a quick look at Lake Mangamahoe where Sean runs.  We hope Grannie and Grandad Gardiner will be able to make it down for a few days at Christmas. 

Last but not least, big congratulations to our good friend Mandy who won Taranaki Sportswoman of the Year for her great effort at the Commonwealth Games.  An award well deserved.