Rory Gardiner's Webpage

03, Nov, 2009

Tuesday 3rd November 2009


Tonight Rory is asleep in his bed in the RM House apartment.  Sean did the night shift on the ward last night and Rory was restless, sleeping little.  I have noticed his sleeping pattern change over the past few days.  He has been sleeping a lot more during the day, when there is less disturbance, and we are sitting quietly at his side.  This results in him being restless and distressed at night, plus he is kept up by the iv fluids, and the nurses.  We have kept him awake today so hopefully he will sleep better tonight. 

Rory had a small vomit this morning but has had no other episode today.  His platelets have risen slightly to 38, likely as a result of his stem cell transplant yesterday so he did not receive a platelet transfusion today (the cut off is 11).  Nurse Jane inserted the insuflon into his leg and he received his first dose of GCSF.  We had a visit from lovely Nurse Steph to collect Rory's beads of courage (he is only a few short of 700).  Rory was discharged mid-morning, and clinic visits have been arranged for Friday and Monday. 

Sean, Rory and I made quite a sight walking across Grafton Bridge to the RM apartment.  We were loaded down with gear, Rory in the buggy, with the dolphin helium balloon tied to it.  The large balloon ducked and dived in the wind taking out several passersby.  We couldn't help but think Trudi and Kody would have had the last laugh.  When we got to RM apartment I unpacked.  Rory sat quietly on the balcony in the sun looking at the view, and watching the traffic go by on the highway.  He must have sat there for 20 minutes.  He then played with the lego.  He has a particular fascination with building vehicles/crafts and equipping his characters with weapons (light sabers, swords, guns, dynamite).  Sam arrived home at lunchtime from RM House school.  This morning he had been working on his dinosaur discovery news story with friend Noah, and had a session of yoga. 

This afternoon we took the boys to the movies at Sylvia Park to see G-Force.  It was on in the half pipe theatre where they have bean bag sessions.  The theatre is small and contains 16 giant bean bags.  You hire a bean bag (which fits two) to see the movie.  It was quite fun, and the movie was enjoyable. 

My mum said to me tonight seeing Rory suffer must tear me up.  And it does, but I don't dwell on it.  I don't let myself.  I have a job to do and I get on with it.  He needs me.  There isn't the luxury of giving in to my feelings, of saying I can't do this anymore, I can't take it, I am broken by it.  To get through I deny my own feelings.  I push them down deep.  I don't think about them, and I force myself not to feel them.  In many ways you become numb.  I focus on getting through each day, on forging forward.  It is almost like being a snow plough in winter.  I'm not sure how good it is for me, but at this point it doesn't matter.  What matters is keeping Rory alive, giving him strength, comfort, love, and hope.  He has been through hell, continues to go through it every day, when he should be in the play ground at Dargaville Primary running around with his friends.  I am so proud of him.  He has endured more than anyone should have to endure over these past seven months, and he still manages to smile.  I know he is not far from the end but it still feels like a marathon which we have only just begun.  So I brace my back against the weight and I look down the path, because I love him.