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07, Jan, 2010

Thursday 7th January 2010


 

I feel a bit tired, and I'm not sure why.  Sleep and food aren't providing a pick up, and I find myself longing for a can of coke or a chocolate bar.  Our days are packed with activity from the time we get up till we hit our beds at night, starting with a 10km run.  I think I might be pushing too hard too soon.  In our desperate necessary push forward toward better things for Rory, and us all, we force what we went through last year back into the darkest corners of our minds but I'm not sure this is the best way to deal with what we went through.  I think we are all suffering the mental, emotional and physical after effects, and I think fatigue is evidence of it.  I also tend to forget there is another layer in our lives now, and there is added work and pressure associated with ensuring Rory gets the best support available.  I have spent considerable time this week organising the battery of tests Rory has to have on the 26th of January, our travel arrangements, and accommodation.  I have also been working with Rory on his ND therapy programme every day.  I wonder how I am going to be able to fit work in any time soon. 

I am reminded of the preciousness of life, and of Rory's uncertain future, on a daily basis.  Two children whose families are part of the Medulloblastoma email group (which is international) are dying as cancer has returned and there is no curative medicine for them.  Their mothers are reaching out to others in the email group for support, and you can feel their emotions acutely; anguish, pain, helplessness, desperation, confusion, anger, and sorrow.  Reading about their journey makes it hard to breathe.  Mothers who have lost their children to medulloblastoma (the type of brain tumour which Rory has) are sharing their wisdom to offer strength.  One of the fathers who lost his son has written a book about his son's journey.  This has been turned into a motion picture due out in mid-2010 www.letterstogodthemovie.com .  I checked out the website and was moved deeply, but I know the movie is not something I could watch.  It is too close to home, like if the wind changed it could be Rory's life.  I want so much for him to stay in remission, but can't bring myself to believe he will.  If I believe in a miracle, and the cancer returns, the fall may be too fa, and too hard for me to get up from.  So I remain pragmatic.  I think I will only be able to breathe out when he reaches the magic 5-year mark and is considered to have made it. 

The boys and I had a town day today with Nana Honnor.  I remember tagging along in town with mum (and Guy) during the school holidays when I was a girl.  We enjoyed helping mum with her jobs, receiving a little treat, and having lunch at our favourite cafe. 

Yesterday (Wednesday) was a busy day.  Rory had an assessment with a Physiotherapist and Occupational Therapist from Taranaki Base Hospital.  Rory spent most of the time completing activities with the OT while I spoke to the Physio.  They will prepare an assessment report which contains a therapy programme for Rory.  It is unclear at this stage how much physiotherapy he will receive, but is likely to be greatly reduced from the amount available at Starship.  This concerns me as it means it will take him longer to recover.  I enquired about aquatic therapy.  While we can get access to the indoor pool owned by the Crippled Children's Society there is no aquatic therapist available in Taranaki.  We would have to go it alone.  A Speech Therapist is available at the Hospital to help Rory re-learn how to breathe while eating.  I learnt the Ministry of Education has a team of specialists/therapists who work with disabled children to ensure they have equal opportunities to education.  They will evaluate Rory's needs at school and offer support and resources where they are required.  One of the key issues is safety at school i.e. being knocked over as he has poor balance.  After the session we picked Nana up from the neighbouring Hospice shop where she works as a volunteer.  All the other volunteers had heard about Rory from Nana so they made a fuss of him.  He was like a mini-celebrity!  Sam was waiting for us when we got home.  He had been towning around with Poppa.  After lunch we took Rory for a ride on the coastal walkway.  It was his first time on a bike (with training wheels) since July.  He managed to hold onto the handlebars but regularly veered left (his steering is dominated by the right hand).  His left foot slipped off the pedal some times, but not as often as I thought it would.  His leg muscles are very weak and he could only manage a couple of revolutions on flat ground.  On a down ward slope he was ok, but on any sort of incline he couldn't move.  I helped him steer and pushed for most of the return trip to the wind wand from East End.  We stopped for a while to watch Te Kupenga Stone sculpters on the foreshore.  They are making fantastic creations from huge boulders.  You can check them out at www.tekupenga.com .  For their hard work I bought the boys an icecream from Iona dairy, New Plymouth's long standing best ice cream source. 

On Tuesday afternoon we spent a couple of hours with my school friend Janine, and her daughter Kenzie (and a friend).  The kids enjoyed having a water pistol and water bomb fight, and using the hose in the back yard.  After they burnt off some energy they sat down and shareed a bowl of chips and some cookies.  Janine and her family visited the Gold Coast 14 months ago and showed us their photos and the brochures they had saved.  I picked up many handy tips for our Make a Wish trip in March.