Rory Gardiner's Webpage

24, Jan, 2010

Sunday 24th January 2010


I am trying to stay calm about what this week will deliver.  I push the potential terrible outcome down inside me.  I refuse to think about it, but it is hard.  It is like someone is playing a twisted game with Rory's life, with our lives.  During remission each day Rory steps further away from the completion of treatment is progress on the path to recovery.  Each step is hard work.  Yet someone holds a loaded gun to Rory's head, to our heads, much like Russian roulette.  As the odds are 50:50 the gun barrel is half full with bullets.  Each time Rory has an MRI someone spins the barrel and pulls the trigger.  We can only wait to see if he has been fortunate.  I keep telling myself lightening couldn't possibly strike in the same place twice yet I know it can.  I people we will take the fortunate 50%, and I hope with all my heart we do, but saying this never sits comfortably because if Rory is one of the lucky ones it means other children are not.  Rory's cancer is aggressive and highly invasive.  He will be returning to Starship for an MRI four times this year; January, April, July, and October.  Each time we return I know I am going to feel sick in the stomach and torn into a million pieces.  I am determined not to show this to Rory.  He needs to feel as safe and secure as possible, he needs to know everything is ok.  A potential terrible outcome will have major implications for all our lives.  Further treatment in New Zealand can only buy Rory time, and we would have to take him to America for any hope at returning to remission.  I refuse to dwell on this until it is absolutely necessary, and hopefully it won't ever be. 

Today we drove south to Opunake for a surf life saving carnival.  Poppa was officiating and after lunch there were events for under-14s.  We arrived at the beach a bit late at the end of the adults events.  There was an early break for lunch so we headed up onto the cliff top for a walk around Lake Opunake.  Rory walked most of the way along the grass and dirt track himself.  W we stopped part the way around to look in an old maori cemetery and made sure we cleansed ourselves with water as we left.  I was shocked at the condition of the lake, it must have been pretty fantastic once.  We collected a poroporo seed pod and a karaka seed for the science table.  Rory thought the fat yellow ripe karaka berries smelled like juicy fruit chewing gum.  We had lunch at the beach with Nana, Uncle Guy, Sacha and Corbyn.  After lunch Sam and Sacha took part in the children's events.  It was Sam's first time and he was very nervous.  The first event was the surf race and the buoys were out over his head.  Opunake is renowned for rough seas and while it was mild today there were plenty of decent sized dumping waves.  Sam made it out to the first buoy and was half way along to the second when a big wave knocked him under.  He said he felt like he was drowning and struggled to reach the surface.  When he did he put his hand up and was rescued by a lifeguard with a tube, and given a ride to shore in the IRB.  He was a bit shaken up but held together well.  I was proud of him for giving it a go.  I had a very similar experience at Opunake as a 14 year old junior lifeguard in huge surf, as did Uncle Guy (and I'm sure Poppa before us).  Sam went on to come 3rd in the sprints and 3rd in the beach flags.  He said he enjoyed himself but is a bit wary about another surf race.  Living in Waihue for the past 3 ½ years we swam largely in Kai Iwi Lakes so the wild west coast sea will take some getting used to.  Rory spent the afternoon watching Sam compete and digging in the sand with cousin Corbyn. 

We have had a couple of quieter days.  Apparently (according to my mother) I go like the clappers most of the time, collapse into a heap periodically to recovery and regroup, then beginning again!  Yesterday (Saturday) Sam and I had our long weekly run/ride down the Te Henui walkway.  When we got home I put Rory on the scales for the first time in a month.  His weight is holding around 22kg which is positive.  It still takes him a very long time to eat, and it is something we will have to watch when he returns to school.  Under pressure he refuses food altogether.  He is still experiencing strong wind/burps which now includes during exercising.  A Speech Therapist is going to assess the cause in the next couple of weeks.  Saturday was a quiet morning at home.  Rory baked some butterfly cakes, and I wrote an article for the next issue of the Born to Bead newsletter which goes out to artists, sponsors and stakeholders in the Beads of Courage programme for child cancer patients.  The boys passed the time with their favourite activities; drawing, building with the lego, playing the playstation, and reading comics.  After lunch we visited Pouakai Farm Park.  The boys fed the animals; goats, sheep, chickens, ducks, geese, pigeons, emu, peacock, a zebra.  We admired the lions, a pair of bobcat and a variety of monkeys.  Rory was taken with a pair of Cockatoo which said hello and being able to touch an Australian bearded dragon.  Sam liked the lions, and the friendly goats, although he got butted for being too friendly with a stroppy billy!  Even though it was a misty afternoon we went through the bush walk.  Cousins Sacha and Corbyn stayed the night. 

On Friday I got Rory's ND Therapy done early in the day after my run.  It is the best time of the day for him as he is fresh but unfortunately it sometimes  slips down the agenda and happens later in the afternoon.  It is a habit I am trying to break.  We visited Nana at the Hospice shop before Rory had a physio session with Clare at the Taranaki Base Hospital next door.  The therapy room was set up like a giant playroom with mats, balls, a giant swing, goals, hoops, and buckets of bean bags.  Rory tackled a number of new activities; pushing over the giant canvas barrels and stacking them up again, lying on his back legs on a gym ball holding his bottom off the ground (then throwing a ball through a hoop), sitting on a gym ball throwing and catching, hitting a balloon back and forth with Sam, balancing on his knees on the giant swing throwing quoits and then bean bags onto a bucket, shooting bean bags at a bullseye, and playing Wii Sports.  To move his character he had to move his body while standing on a game board.  He enjoyed them all, but was tired after 45 minutes of activity.  Unfortunately Clare is away next week so he will have a break from physio.  After lunch we had a quiet afternoon at home.  A letter from Sean arrived for Rory, as did a new playstation game (Lego Indiana Jones) which was a reward for hard work over the last two weeks. 

On Thursday night I took the boys to Pukekura Park for the Dance competition.  It was a wet night and as I drove out of Nana's I thought I must be made.  Surprisingly the rain eased as we reached the Hatchery Lawn.  We put our mat up front near the stage and held the umbrella up during a couple of light showers.  The sky cleared and the boys loved watching the krumping, techno and shuffling.  The competition was open to anyone aged 18 and under.  There were some very talented dancers and Sam left the park muttering about dying his hair blonde , buying black drain pipe jeans and having dance lessons!