Rory Gardiner's Webpage

04, Mar, 2013

February 2013 update

Rory and I spent two days in Auckland last week so Rory could have an MRI of his brain and spine, and an MRA, at Starship.  It has been 15 months since we were last there and I was more afraid than during any other visit that the Oncologist, Dr Stephen, was going to tell us it was bad news.  On the 11th of February Rory started complaining he couldn’t hear in his left ear, that it was ‘blocked’.  I thought he might have water in it from swimming.  The following day he said he couldn’t hear in class very well so I booked him in to see the Audiologist at Taranaki Base Hospital.  Thankfully someone had cancelled their appointment so he got in the following morning.  The Audiologist tested his hearing, and I was floored to find out he had experienced sudden and significant hearing loss in his left ear to the point where he was almost deaf.  The hearing had declined in his right ear as well.  The Audiologist couldn’t tell us why, but that his ears looked fine.  She adjusted his right hearing aid and made a mold for a new aid which uses improved technology.  She said a hearing aid wouldn’t help his left ear.  We were lucky to be triple booked for an emergency appointment with a local ENT (Ear Nose Throat) Specialist.  He said the most likely cause of the hearing loss was damage from radiotherapy, either to the auditory nerve, or to the blood vessels of the ear (vascular).  He said there was a very small chance it was viral.  The Doctor gave Rory a week’s course of steroids to increase blood flow and reduce any swelling, and anti-viral medication.  The Doctor couldn’t tell us whether Rory would recover any hearing, but said 65% of patients who suffer sudden significant hearing loss do, and the critical period was within two weeks.

Rory was a different child without hearing in his left ear.  His communication ability was hugely diminished, we had to get his attention and speak loudly to his face.  Rory relies heavily on his sight and hearing to make sense of the world around him because he has slow processing speed and difficulty with complex things.  With hearing only partly available to him it was like he was in a world of his own.  It was a huge shock for me and I struggled to know what to do, and it was a battle to get him the urgent help he needed in Taranaki.  I investigated the use of hyperbaric oxygen therapy in Auckland but it wasn’t worth pursuing as a treatment option.  We were fortunate the Hearing Advisor from the Ministry of Education was able to visit Rory’s class on the Monday morning and make sure everything was ok for him at school.  Over the course of the fortnight Rory \ regained half of the hearing he lost.  He now has a new hearing aid in his right ear, and it is worth putting a hearing aid back in his left ear as he can hear some human speech.  I spoke with his Oncologist and we decided to book an MRI, and an MRA (which takes pictures of the blood vessels) urgently to make sure the cancer hadn’t returned, and Rory’s hadn’t experienced a brain bleed.  I was very relieved on Friday to hear both scans were clear.  However, it looks like his VP shunt is over draining his brain of CSF (cerebral spinal fluid).  This may have contributed to the hearing loss.  We heard today from the Neurosurgeons that they wish to leave the shunt in place for now, but we have to monitor Rory for headaches.  Shunts are notorious pieces of technology, 50% fail within the first two years, and 20+% within five years.  Rory has had his almost four years.  Rory and I enjoyed our trip back to Auckland.  We spent the night at Ronald McDonald House and caught up with the Managers, Kate and Lorraine.  We said hello to several of the Doctors and Nurses, visited the Auckland Domain and Museum, and went shopping on Queen Street.  Rory’s reward for being brave (getting the iv line in, and spending an hour in the MRI machine) was to have his left ear pierced.  It was done at Ballistic Tattoo and he has a silver flame.

Colt and Sam are well.  Colt continues to grow like a mushroom.  He is quick, bright and determined.  His favourite phrase at the moment when he doesn’t get his own way is “mum says”.  In the last month he has caught his first trout with Sean, visited the Aquatic Centre with Nana Honnor, and been cared for by Sharon from Porse while I am at work.  At Playcentre he has been enjoying swinging from the rope swing, water play with the hose and trough, and watching the monarch caterpillars develop into butterflies.  I can’t believe how quickly Sam has become a teenager since he started High School.  We took Sam and three of his mates dam dropping, and a group of the Year 9 girls met us there.  There had been some rain so the river was deeper and the flow over the dam faster.  It was scarier.  Some enjoyed the dam, while others had fun on the rope swing.  Sean started a mud fight which sent many kids running for cover.  Sam has joined the Taranaki Canteen Committee and they had their first dinner meeting to go over the plans for the year.  He attended the Central Districts Canteen Summer Camp at Otaki for a weekend and had a great time.  He enjoyed the kayaking, and was deeply affected by the workshop for bereaved siblings.  He and Rory have both participated in their school swimming sports, and last weekend put their names down to play soccer this winter for Inglewood AFC.  I attended the Year 9 Parents Evening at Inglewood High School in an attempt to keep up with what’s happening for my growing teenager.  It was good to hear information directly from the Principal and the Dean and I got a few of my questions answered.  Although I’m not sure I’ll be able to keep assisting with homework when he’s a Year 11!

The hot dry weather has enabled us to take our adventuring to the next level.  We spent a day tramping to the Pouakai Tarn.  Sean and the boys had a dip in the Tarn, and were so hot on the way home they had a second dip in a water hole on the Kaiauai Stream.  We saw a group of six Rifleman in the bush, and heard two Fernbird around the Tarn.  We spent a morning birding with the Ornithological Society.  We took it at their (and Colt’s) pace to count birds on the way to Potaema Sawmp, and climbed to the bottom of the ski field to have lunch outside Manganui Lodge.  We spent our first night on Mt Taranaki and it was wonderful.  We parked at the Dawson Falls carpark and tramped the Lower Lake Dive Track to Lake Dive Hut.  The track is in the bush and goes up spurs and down gullies crossing several streams.  Mangawhero Stream was orange/red.  There were lots of steps and ladders.  We took Sam’s friend Taylor with us and it was a comfortable 4 hours.  Rory did really well.  We tried him with a hiking pole and a hydropack and it made a considerable difference.  We swam and explored Lake Dive.  The boys caught large koura (freshwater crayfish) using salami tied on flax lines.  As the sun went down the mountain was illuminated and it was spectacular.  We all slept in the back bunk room of the hut, lighting the fire after dark.  After breakfast we tramped out via the Upper Lake Dive Track which climbs up through bush and scrub into the tussock belt.  It passes just under the scoria/rock belt.  We turned right and went anti-clockwise around the mountain.  It was clear and we got a fantastic view from high up on top of the Naki.  The track eventually joins the Fantham’s Peak Track, descending quickly with steps past Hooker Shelter.  It took us four hours to get back to the carpark.  Sean and I took the boys along to Te Wawa wetland for the field trip for World Wetlands Day.  We both spoke to a group of over 100 people about our role in the protection of these special and rare ecosystems.  We have continued to be regulars to the Inglewood Pool as the temperature hovers in the mid-20s and the sun continues to shine.

I was saddened this month when my Uncle Harry Honnor, my dad’s big brother, passed away aged 85.  He lived in Paihia, and then Whangarei, and was my only family during my 14 years in Northland.  We used to take the boys to visit him and Pat regularly.  I made the road trip north with my parents, and my Auntie Olwyn and Auntie Mary to say goodbye.  When he retired Uncle Harry had been a Brigadier General in the New Zealand Army, serving in Korea and Vietnam, so he received a military funeral.  On the trip north (and back again) I heard many new stories about my father, his siblings and my grandparents which I have been telling my children.  On the morning of the funeral I went for a run along the Paihia foreshore, past Te Tii beach, and Waitangi to the golf course where Uncle Harry played for many years.  It was peaceful.  My father spoke at the funeral about Harry and their childhood years, then Harry’s daughter (my cousin), and two grand-daughters spoke, followed by the Chairman of the NZ Korean Veterans Association, and a representative of the NZ Army.  I learnt a lot about Uncle Harry which I never knew.  Uncle Harry’s coffin was placed on the top of a NZ Artillary Gunner which was towed by an Army Jeep from the Church to the Paihia cemetery.  The Police closed the road, and family, friends and veterans walked behind.  At the cemetery the Army and the veterans formed a Guard of Honour, and there was a three gun salute.  It was concluded with Taps, the last post bugle call to mark the end of the day.

Rory and our family continue to be the recipients of thoughtful generous gestures.  A cheque arrived in the mail for Rory for $100 from the Inglewood Mothers Friendship Group.  Thank you very much.  I have put this money towards a new two wheel bike for Rory.  After he re-learnt how to ride on two wheels we gave his trike to the Halberg Trust to pass on to another child in Taranaki who would benefit from it.