Rory Gardiner's Webpage

13, Jan, 2010

Wednesday 13th January 2010


I don't know if any of you remember me mentioning Carson Leslie.  He was a boy with medulloblastoma from Texas, USA who featured on You-Tube talking about his battle with cancer.  I posted a link to the interview in one of my daily blogs last year.  Carson passed away early this morning.  He was 16 and had been fighting brain cancer since October 2006.  He endured one full course of treatment, relapsed, battled through a second treatment of chemo, and when nothing else was available joined an experimental drug trial.  In between treatments he had clear MRIs.  I have been following Carson's journey since I joined the Medulloblastoma email group, and his mother has been a source of information, strength and inspiration.  Carson was a bright, vibrant, open, generous, brave soul.  It was his last wish to donate his brain for research in the fight against cancer.  My heart feels heavy for what they have lost.  Last night Rory said to me "is that going to happen to me mum".  I replied "No, even though you are small like a mouse you are strong like a lion".  Rory replied "Small is powerful believe it".  I had to choke back a tear.  I feel like I have lied.  The truth is it may.  We don't know, no one does.  So I lift us up, take one day at a time, wring the most I can out of life, love as much as possible, and be grateful.

It is an interesting experience managing and assisting with Rory's recovery.  To those dealing with disabled people Rory is in very good shape "he looks good", but to unimpaired people he appears disabled.  He seems to fall into some nebulous category in between.  He currently receives some government assistance i.e. physiotherapy through the hospital, but not nearly enough to get him on his feet or ensure his safety and equal opportunity to his peers, in a timely manner.  He does not qualify for ACC as cancer is not considered an accident so anything 'extra' we have to pay for ourselves, or take the time to do ourselves.  I will be quitting my job at the end of the month.  The $41/week disability allowance I receive as his primary caregiver does not go far.  We were very grateful today to collect some monety from Sandy at Hell's Pizza in New Plymouth.  Sandy has continued to sell Kia kaha Rory wrist bands.  Sales of wrist bands, plus donations, over the past three weeks paid for a private physiotherapy assessment today, and an aquatic therapy session in the pool on Monday (thanks Sandy, and for the vouchers for a meal). 

Clare at Taranaki Base Hospital put me in touch with a local physio, Sharon Taylor, who works with children, and has some experience in aquatic therapy.  Rory and I met with her this morning and I was very impressed.  Sharon has a holistic approach, was very experienced, and had a gentle manner.  She made a number of suggestions for exercises/activities Rory can do to aid his recovery i.e. Nordic walking with poles, climbing up slides and utilising school playground equipment out of school hours, bike riding, ball games (throw, catch, hit with a bat), skipping, jumping on a mat or trampoline.  Many of these activities require two people plus he needs support from an adult for stablilisation and supervision for safety.  Rory particularly enjoyed jumping (two feet together) onto air filled plastic bags popping them with a loud bang.  He hasn't jumped in months as a hard landing under his feet hurts his head.  As he jumped his left foot regularly lagged behind but he was determined, and popped half a dozen bags, even though he fell over a few times on the soft mat.  Sharon was very positive about the potential for Rory to recover physically, although it will take time, possibly up to two years.  It was reassuring and uplifting to hear this.  Sharon had two large gentle Alsation dogs and the boys were blown away by them coming over to say hello.  This afternoon I took the boys for a swim at the Aquatic Centre.  Sam is a fish.  He likes being under the water, and in true boy fashion runs along the huge blow up bullet bombing or sliding off into the deep water.  Both boys like riding the waves when the wave machine is on.  Rory floats inside a foam ring and likes being out deep.  He also likes being in the shallow pool under the fountain or against the strong water jets.  He is tired tonight and has spent some time at the table creating a picture - a green boat with a treasure chest, drivers seat, motor to power it, canon, and a missile!

Yesterday (Tuesday) morning the boys and I went for 9 holes of golf at Kaitake golf course in Oakura.  It is under the Kaitake Range which extends from Mt Taranaki.  Golf is not my thing, but several members of my family enjoy it.  I tolerate being on a golf course for the simple pleasure of being outside in the green under the sun, getting exercise, and feeling tui whirr by.  It was a good opportunity for Sam to try a new sport and get some exercise.  To my surprise Rory wanted to play (after watching Nana and Sam complete the first hole).  He completed holes 2 and 3.  His shots weren't large but they were fairly straight and he walked the length of the fairways.  I pushed him over holes 3-7 while Sam and Nana played (Sam impressively hit a tree).  He got out of the buggy to complete hole 8 but was tired.  We will definitely be returning for another game next week.  After lunch we made the most of the fine weather and spent a couple of hours on Oakura beach in the black sand.  It was a sunny afternoon, but then cold.  Sam dipped into the water but didn't last long.  He and I dug a large deep hole in the sand at the high tide line and made sand castles.  Rory and Nana decorated the castles and partially buried Rory in the sand.  Rory collected some shells and a karaka berry for our science table.  On our way back I enquired at the Crippled Children's Society about access to their indoor heated pool for Rory's therapy. 

On Monday the boys spent the morning at home with Nana and their cousins while I had an appointment.  Sam and Rory have been spending a bit of time with their cousins Sacha and Corbyn and the four children are a noisy active whirlwind (ages 5, 7, 7, and 10).  After lunch Rory attended a therapy session at Taranaki Base Hospital with Clare (Physio) and Paula (OT).  Rory completed a number of activities; a large floor puzzle which retrieved the pieces for walking along a line in different ways, stepping through a ladder on the floor to shoot hoops, playing Guess Who while holding his body in certain positions to strengthen muscles, stretches on the mat, and a wood game/puzzle where he had to match the pieces to images on a card.  Clare gave me a pile of information to digest; contact details of a local Physio with some aquatic experience, the Halberg Trust Officer at Sport Taranaki who runs a Moveable Programme for disabled children and helps families access the Halberg Trust Activity Fund which provides one off grants to ensure disabled children obtain equal access to sport, Trikes NZ who modify bikes for disabled children, and the Crippled Children's Society.  Maximising Rory's recovery is akin to completing a 1000 piece puzzle, there are many small pieces which have to be found and pieced together for the big picture to emerge.