Rory Gardiner's Webpage

30, Oct, 2009

Friday 30th October 2009


We all seem to be different during this cycle of chemo; calmer, more organised, more patient, and in some strange way more relaxed.  It's like we are no longer fighting the situation.  I think it's because it is the last cycle, plus we have managed the first three.  Rory is still having a rough time, but seems a lot more at peace.  Even though he is still saying he hates chemo, he is also saying he is feeling stronger and fighting. 

I spoke too soon last night.  Rory started vomiting not long after I completed the website entry.  His anti-nausea medication is being alternated so he receives one dose of something every four hours.  It was a restless night for Rory and Sean.  I was shattered and slept like a log at the RM apartment.  Sam and I went for a run in the Auckland Domain this morning.  I am certainly not up to the Auckland marathon which is being held tomorrow!  Rory received his chemotherapy (cyclophosphamide) this morning.  It was infused over an hour.  He has been sick on and off all day, and feels miserable.  My heart goes out to him.  All I can do is help and comfort him.  We have slowed the rate of his milkshake to 50ml/hr to try and alleviate the vomiting, so it now runs almost all day (20 hours).  We have been giving Rory pamol for pain relief, but sometimes he can't keep it down. 

We have spent the day; playing Cadoo, using the Playstation, working on school work (time, spelling), completing a sticker book, and sewing and painting a black cape for Halloween tomorrow.  There is going to be a Halloween celebration on the ward, and all the children in their individual rooms have been working on their capes this afternoon.  Barbara the Play Specialist has been run off her feet.  Sean ducked down to the Child Cancer Foundation and had a reiki therapy session.  Donna, the Northland Manager, slipped some vouchers under our RM apartment door yesterday afternoon to help us out (thanks Donna).   We had a visit from Dietician Amy.  When Rory's blood counts are recovering we will halve the amount of milkshake he receives overnight as part of the process to encourage him to eat and drink again.  The ng tube will not be removed until he can maintain his own hydration and weight.  We also had a visit from Physio Rachel who has been getting the wheels in motion for Rory's therapy when he is released.  A member of our Auckland-based support team, Money Penny (aka Lyn), slipped into the ward unbeknownst to us, and left some Star Wars DVDs for the boys.  They were thrilled to see they were the episodes they were missing (thanks Money Penny).  Sam has been to school at RM House today.  This morning he finished his dinosaur artwork, wrote a poem about dinosaurs, and completed some maths exercises.  This afternoon was a free flow art session.  Sam made a skeleton mask for Halloween tomorrow, and helped a younger boy in the class make one for himself.  I am on duty on the ward tonight.