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Rory Gardiner's Webpage

07, Jun, 2009

7th June 2009


 

I had to change all the calendars in the house today, they all still said May.  I don't know where the time has gone, it has been 12 weeks since Rory was diagnosed.  Much has changed, yet some things stay the same.  I sit here watching the boys play hand ball and soccer on the trampoline and the fear of Rory getting hurt makes it almost hard to breathe.  But both Mr Law and Dr Jason told us not to short change Rory, to let him enjoy life as a 7 year old boy.  We try, but have noticed changes in him, and in Sam.  Rory regularly holds back from physical play, especially with other children.  I think he has a fear of getting hurt and doesn't trust the others to keep him safe.  He prefers now to sit with adults and talk, or play quietly with toys inside.  It makes Sean and I sad and we try and bring out the energetic, fearless adventurous spirit he once had.  Sam is a lot more gentle and restrained with his brother, and I have seen him look at him a few times almost as if he doesn't recognise who he has become. 

The Pioneer bar/cafe in Orewa, its Director Dot Wilton, the patrons, Orewa's great cooks, and Trudi and Katherine did a wonderful thing for Rory on Friday night.  Dot organised a bake-off and several of Orewa's cooks made desserts which were judged and auctioned off with the proceeds going to Rory.  Katherine attended as a celebrity judge, and Trudi was in her element as chief organiser and PR specialist.  They both had a great time.  We were all blown away by the generosity and support of the Orewa community, and Dot who raised a staggering $1512.70 for Rory.  We would like to say thank you so much to all those involved, we are very grateful. 

Rory enjoys his weekends at home. We attended Sam's soccer game on Saturday morning and they won 4:1.  Nikau Neuman, the producer of the pirate, came up to say Hi and Rory was pleased to see him, although a little shy.  Today we are heading up to Waiotemarama River/beach to see if the boys can catch a fish for tea, and to have a walk and beach comb.  I have booked Rory for an initial consultation with Australian Therapist Ian Hunter when he is next in Auckland in August.  Rory is bearing up to radiotherapy well.  He still has an itchy head and we are using pinetarsol solution to rinse/wash him and aloe vera gel for relief.  He still has an area of blistering/weeping due to a reaction to the bandages used to cover the shunt wound, which is being exacerbated by radiotherapy.  Dr Jason said this should heal of its own accord, and the shunt wound is still healing slowly.  We are starting to think about chemotherapy and the planning for this will begin in a week or so.