Rory Gardiner's Webpage

04, Nov, 2009

Wednesday 4th November 2009


We are now playing the watching and waiting game, barely taking our eyes off Rory, waiting to see if he develops a temperature.  This is the key indicator of an infection while his blood counts and immune system are at rock bottom.  It results in re-admission to Starship.  It has happened with the previous three cycles, he has had 1-6 days of freedom before being re-caged for 5-7 days.  I am paranoid about infection as it can be life threatening, and we have to respond instantly to any temperature.  I must ask him 50 times a day if he is ok, and fuss around him to make sure he is warm enough, cool enough, hydrated enough, everything enough.  It must drive him nuts.  I know the emotion I suppress above all others is fear.  I read in a book that fear is a precursor of courage.  I can only hope this is the case.  I feel fear in every corner of my life; fear I will lose him, fear I will have to make him suffer for the remainder of his life to keep him alive, fear of what the future holds for him (childhood cancer survivors suffer some pretty dreadful long term affects which compromise the quality of their lives as a result of the treatments given to keep them alive), fear I will not be strong enough to endure it.  I have succumbed to the black dog (depression) twice in my life.  I do not intend to let him in again. 

Rory woke up at 4am vomiting this morning to vomit.  Thankfully it was the only one, and he managed to keep the majority of his milkshake down.  He had a GCSF injection this morning.  We went for a walk down Queen Street.  We watched Sean have a haircut in the Barbers, and spent a while in JB Hi-Fi perusing the music, DVDs and games.  I picked up an old CD which has given the boys cause to ridicule me - Duran Duran Greatest Hits.  I must confess to being a teenager in the 80's, complete with long permed hair, and Madonna-like clothes.  Although I don't remember their voices being quite so high!  Rory picked out a collection of Tintin DVDs with a voucher he had been given.  Sam went to school at RM House today.  This morning he had a cooking lesson with Home Ec teacher Chris.  When I picked him up he had a plate of delicious Anzac biscuits for us.  This afternoon he worked on his dinosaur dinorama (made from plasticine).  The Associate Minister of Education visited his classroom (complete with a number of officials) around 2.30pm.  She spoke to both Sam and I about our experiences with the RM House classroom.  After school we went for a walk through the Domain and fed the rock pigeons who mobbed us for the bread.  At one stage Sean and Sam resembled scarecrows, and I looked like a crazy woman waving my arms trying to prevent them from landing all over Rory in his buggy.  Aucklanders must look at us and think manuhiri (visitors)!