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Rory Gardiner's Webpage

08, Oct, 2009

Thursday 8th October 2009


 

We had a repeat episode with Rory last night.  He woke at 1.30am needing the bathroom.  When he got back to bed he was restless and uncomfortable.  He was sick at 2am, and this time the ng tube came up out of his mouth.  There is nothing for us to do but un-tape it from his face, stop his milkshake, and try and get him back to sleep.  For the past two nights he has received nowhere near the volume of milkshake he requires to maintain his weight.  The vomiting over the past week has also drained a lot of the nutrition he has received.  When I weighed him today he was 1kg lighter than he was on Monday.  He drinks a little during the day, and occasionally nibbles on food, but it is insignificant. 

Rory had his GCSF injection and then I took him across to Starship to get a finger prick blood test.  His platelets had dropped to 21, and he is now neutropenic (0.43) and has no immunity.  We called into RM House to organise a pass for Auckland Zoo, then headed down to the Child Cancer Foundation (CCF) to meet the Family Support Manager for Auckland and Northland, Donna Fitzgibbon.  It was good to re-establish a connection with the CCF in Auckland.  Carol had been a great source of support for us when we were away from home, and her leaving had left a vacant space.  Donna sent us away with some vouchers and a treat for the boys.  They were gratefully received. 

We cruised around Auckland Zoo for a couple of hours.  It was very busy as it was school holidays but we managed to avoid the crowds.  We kept Rory out in the fresh air, away from enclosed spaces.  The highlights were seeing the Gallapagos Island tortoises eating carrots, a male tiger up close, the kune kune pigs feeding, and a mean looking crocodile with sharp teeth who looks like he was made by Weta Workshop. 

Mid-afternoon I took Rory back to Starship and he had a platelet transfusion.  Nurse Amanda put a new ng tube down.  Even though it is an unpleasant procedure, which I know he hates, Rory was a trooper.  I was very proud of him.  I can't imagine how hard it is at 7 years old to confront your fears, and find the courage within yourself to endure them, again and again.