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Rory Gardiner's Webpage

08, Dec, 2009

Tuesday 8th December 2009


 

Happy 38th Birthday Sean. 

December brings a run of birthdays in our family, first Sam, then Sean, then Grandad Gardiner on Christmas Day, and Auntie Teri just before New Year.  With the addition of Christmas it can be a very busy and budget challenging time!

The boys spent the day with Sean while I went to work at Council.  Sean thoroughly enjoyed his day off with the boys.  Rory drew a neat picture of Sean in his hunting gear, with a scar on his face, chewing a piece of grass, for his birthday, and wrote a special message on the back.  The boys played/challenged each other on the Playstation.  They meandered back to the house along the road from the Whakapara garage where Sean had dropped his truck for a wof.  One of Sean's old friends, Pabs, called in for lunch and the boys shared toasties and mega milk.  After lunch they went out to Ngahau beach to collect pips and mussels.  Sean and Sam had a swim and Rory made sea soup with leaves, shells, feathers, and seaweed.

Yesterday Rory had his weekly finger prick blood test.  His blood results have all increased since receiving the blood transfusion (haemoglobin 134, platelets 105, white cell count 4.2, neutrophils 2.5).  His platelets and white cell count are still lower than 'normal'.  Nurse Layoni changed the heparin, plugs and dressing for his Hickman line.  After lunch we had a visit from Abi, the Northland support worker for the Child Cancer Foundation.  Abi brought a bag of fruit and some vouchers to help us out at Christmas.  They were much appreciated.  The boys and I made chocolate éclairs for desert for Sean's birthday.  I went through Rory's NDT programme.  I am concerned about his left hand and arm.  Its functioning is worse now than it has ever been.  He has regressed physically to what it was like at the end of the surgical phase of his treatment back in May.  For the left hand activity we stacked blocks.  He struggles to position the blocks, and steady them.  His hand wavers all over the place and it is difficult for him to control it. 

Rory has always been an early bird, often up before 6am.  Sam always slept later, and as he has gotten older is the one to be dragged out of bed, but now the roles are reversed.  Rory sleeps later every day.  He wakes saying he is tired and wants more sleep.  He is easily sleeping 10 hours a night, occasionally 11.  I have to make more of an effort to get him into bed earlier so he doesn't wake feeling this way.  I sometimes creep into his room and watch him sleeping.  He appears so frail with his pale skin, dark sunken eyes and no hair.  I have to stop myself from touching him to reassure myself he is alive.