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Rory Gardiner's Webpage

02, Sep, 2009

Wednesday 2nd September 2009


 

I was shocked to see Rory this afternoon.  Seeing a child without hair and with a large proportion of their facial hair missing is shocking enough, but Rory is also colourless and weak.  He looks as though he is having the life sucked out of him.  Yesterday and today he received the chemo drug Cyclophosphamide, iv fluids and electrolytes, as well as his milkshake.  Tomorrow is a rest day so he will only receive iv fluids and electrolytes and his milkshake.  It is dark in the ward room and he is sleeping beside me, twitching regularly as if he struggles to find peace even in sleep.  I can see the lights of Auckland outside the window, the Sky Tower is a vivid blue.  Sean has left for RM house to get a good nights sleep, his first for three days.  I am on watch.  Sam is being cared for at the Newmans (thank you Greg and Tracey, plus for the yummy dinner). 

The cross country today was a bit of a disaster for Sam.  Sam's category, the nine year old boys, are a competitive bunch with several fit active lads amongst them.  As they approached half way round the course Conor was well out in front, with Hoani giving chase, a group of six boys following, with Sam in the back.  I thought Sam would catch and overtake the groups but he fell further back to finish ninth.  He was red faced, choking back some tears, and holding his side as he crossed the finish line.  I know he was disappointed.  I think we all expect to continue to do and achieve the things we did before Rory's illness.  We fight for their continued existence but little by little things have fallen away as we struggle to cope, to survive.  It is almost impossible to communicate to others what it is like.  It is like many things in life, one of the things you have to experience to know.  A year ago Sam and I were covering over 50kms a week running and riding, but it is now on hold.  Mentally and emotionally Sam is coping with a lot for a nine year old, and the impending move hasn't made it any easier.  His kidney is also still sore from Saturday soccer.  I think today was a lesson learnt for all of us.  It is an achievement if we are able to participate, and anything else is a bonus.  For me, as a closet runner, it was great to see the kids running and giving it their all.  A boy in Rory's class, Patrick, won the 8 year old boys (Matai was a close second), and Esther, a girl in Sam's class, won the 9 year old girls.  All with some impressive running.  Kody's little brother Ben ran well and got third.  I felt the good vibes from them all. 

I was on the road once Sam had recovered and was in Auckland by 2pm.  I don't think I could have waited a minute longer to see Rory.  He was happy to see me too.  The nurses are now keeping Rory's milkshake going round the clock at a very low rate, as he has lost 300 grams over the past three days.  He was running a low grade temperature this morning so the nurses have taken a blood sample to check for infection, and he has been started on iv antibiotics as a precautionary measure.  Rory has been complaining of sore legs and sensitivity to the light today so he has been receiving pain relief.  This afternoon he was sick and has diahorea as well.  These responses occurred during the first chemo cycle.  His haemoglobin is low so he may receive a blood transfusion tomorrow.