Rory Gardiner's Webpage

17, Apr, 2009

17th April 2009

Rory and I won't be going home tomorrow.  His temperature spiked to 38.5 degrees this afternoon, and 38 degrees is the cut off limit.  It is a tough time for both of us.  We are desperate to get away and live a normal life for a few days but something inside his body is fighting him.  Even though we can't do anything about the spikes both Rory and I are paranoid about his temperature and walking on egg shells to do everything we can to keep him cool.  But with no effect.  The doctors keep assuring me they are on the right track but it is hard to remain convinced when little changes day by day.  We are going to spend tonight on the Ward as we are both worn out from three nights of 1am get ups.  Maybe a full nights sleep will make a difference.  The Sky Tower was red last night as we walked back to Ronald McDonald House.  We reckoned it was because Rory had a new IV put in and there had been some blood. 

Rory had the last of his stitches out today, the ones from the second surgery on the front of his head.  He grimaced a few times but didn't make a sound.  He had another session with the physio and occupational therapist, Rachel and Rebecca, and rode a normal bike around the 3rd floor.  This drew many looks and smiles as it is a bit of an oddity, even for Starship.  He also completed an obstacle course to collect pieces to make a puzzle.

We have had some lovely visitors today.  We bumped into Jo and Mia in the carpark.  Mia is back onto twice weekly blood tests and is having some really great days.  We also bumped into Nan Pullman in the carpark.  She had come to whisk us out into the wild for a couple of hours.  Unfortunately we were filled up with appointments but we will be jumping at the opportunity next time (thanks Nan).  My childhood friends from New Plymouth, "the Girls", Janine Schofield, Darlene Ladbrook, Mandy McGregor, and Joanne Brimelow, took a road trip north to visit us and Cindy (Rimmington) who is hapu and based in Auckland.  Thanks Briana and Kenzie - Rory loved the Battle Brawlers.  We were also visited by Korie's Nana Morrison.  It was wonderful to meet her, and hear news from home.  Rory especially enjoyed talking about children they knew (Korie's Nana teaches at Dargaville Intermediate).  Thank you David, Margaret and family for your generous gift.  I know it is going to come in very handy in the months ahead.    

We also met with one of the radio therapy team to plan the rest of the preparation which needs to be done prior to starting treatment.  We have to be back at Starship next Thursday for the operation to put in the permacath.  We will be in and out several times before the 5th to allow harvesting of the bone marrow.