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Rory Gardiner's Webpage

16, Nov, 2009

Monday 16th November 2009


 

The Doctors and Nurses at Starship have done a wonderful job caring for Rory this year.  They have saved his life, and kept him alive and as comfortable as possible during treatment I could never have imagined.  We have been blown away by their dedication, and grateful for their existence.  For the past 8 months (almost to the day) I have tried to match their contribution, willed myself to be calm, selfless, patient, tolerant and strong, and I have succeeded.  But over the past few days I have struggled.  I have been frustrated, irritable, and impatient.  I felt like I couldn't remain on the ward one more hour.  I think it was because the end of treatment was in sight, but teasingly beyond my grasp.  I have disagreed with the Doctors about keeping Rory in the ward, and pumped full of antibiotics, for as long as they have (nine days).  The Doctors err on the side of caution (to the nth degree), and sometimes I feel it is to the detriment of Rory's overall health and wellbeing.  I am powerless to effect change, and put in place an alternative regime.  I know my attitude has affected all the boys.  Their moods have been mirror images of mine, but I have been incapable of feeling any other way.  So we have all struggled, and waited. 

It took all day to arrange Rory's discharge.  His white blood count had come up to 1.18, and his neutophils to 0.45.  This was high enough for him to be released.  He had a GCSF injection this morning, and will need them for a few more days to aid his immune system's recovery.  This morning Rory had a repeat hearing test.  Fortunately there has been no change to his hearing since the last chemo cycle, although there may be deterioration with time.  He has suffered some hearing loss at the mid and high frequencies, and will need a hearing aid for school.  The technician took a mould of his ears today so the hearing aids can be made.  He will have them fitted in January. 

At 2.30pm we saw Dr Stephen.  He gave the sign-off for Rory to be discharged.  Rory had his Hickman lines locked/filled with the key antibiotic (Vancomyacin).  Tomorrow this will be replaced with Heparin (normal lock) which prevents his blood from clotting.  Rory will need a blood test on Wednesday morning to determine if he needs a platelet transfusion before we head home on Wednesday afternoon.  He is booked to have an operation to remove the Hickman line on the 17th of December.  This is the earliest he can get in.  We hope he won't be 'bumped off' due to other surgical priorities as he would have to wait a further 5 weeks.  At the end of January 2010 he will have an MRI, a repeat kidney function test and heart echo, and a clinic visit with Dr Stephen. 

We finally got to the RM apartment at 4.30pm!  Thankfully Sam has gotten out of the ward today for school at RM House.  This morning they did reading and maths, and this afternoon had some computer time and played the Amazing mammoth hunt board game.  In some ways I feel bad he is leaving RM school, and his good friend Noah, this week.  The school has provided him with something tangible to do, stability and a sense of normality.  Noah has provided him with warmth and support, unique in the way only a sibling affected by cancer can.   I know he will miss them both.