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Rory Gardiner's Webpage

06, Oct, 2009

Tuesday 6th October 2009


 

Rory has been discharged from Starship but none of us feel as buoyed about it as we have in the past.  It is incredibly worrying how much lower he is after each subsequent dose of chemo.  After the first cycle he was relatively full of life and keen to get out, after the second cycle he alternated between up and down but was enthusiastic to see the sky.  This morning when Sam and I arrived after a run in the rain he was down, miserable and lethargic.  It frightens me to see him like this, and I feel helpless.  He had vomited twice during the night, so the Nurse put another anti-nausea patch on the side of his neck.  The Doctors came around this morning and were happy for Rory to be discharged.  His blood results were ok, nothing had grown from the blood culture on Saturday so the iv antibiotics could stop, and he didn't have a temperature.  Sean and I were less keen for him to go, we felt uneasy.  We sat quietly with him in the ward room for a couple of hours.  The Nurse put in a new Insuflon and Sean gave him a GCSF injection to boost his stem cells.  Rory then lay in bed but didn't sleep.  I decided we couldn't just sit there for another day so I took action, gave him a bath, and spoke to the Nurse about being discharged.  The Nurse organised the paperwork and I got Rory dressed in his clothes (he has been in pjs for a week).  He perked up a little bit and by 11am we were out the door.  I'm not going to let Rory wallow, to be sucked down into a rut which he can't climb out of.  If the Doctors say he's ok then we need to get him to sleep in a normal bed, nibble real food, wear clothes, breath fresh air, and see trees and sky.  Life is too short for him to waste it in a hospital bed.  Yesterday afternoon Rory was perked up by receiving a lovely letter from Mrs Wily and Sparky the cat. 

On our way out of Starship we called in to see Rebecca the Occupational Therapist to pick up a supersized buggy she had sourced for us.  It is massive.  I can hardly see over it!  Rory looks like he is sitting in a lazy boy chair.  I will have to take a photo of him in it.  He says he feels like a king.  I have told him King Julian the lemur from Madagascar!  We left our old buggy for Starship.  We appreciate all the effort Rebecca has made to source the new buggy for us.  It is large enough for Rory to be able to use long-term until he is on his feet again.  At the moment he is a shadow of his former self.  While he has maintained his weight he is pale, unsteady, drained of energy, and hairless.  Walking around the apartment is all he can manage before he is short of breath and worn out.  It is 6.30pm and he is in bed in the boy's bedroom.  I can hear him and Sam playing Star Wars cards.  It is nice to hear his loud cheeky, bossy voice "who's the man" (he won the game).  The spirit inside him is the hope I cling to every day.  That it will drive him to lead a happy, rich and full life. 

After lunch at the apartment we went for a walk down Queen Street and it was almost overpowering; people coming and going in all directions, continuous loud noises, and a variety of smells (bus fumes, food outlets, perfume, cigarettes).  We stopped to get Sam a haircut at a Barbers whose chairs line their front window so passersby can look in and see.  Sam looks a lot older with short stylish hair.  We went into Groovy records.  The boys enjoyed the music, and looked through some of the cool Star Wars and Superhero books, and I chuckled at the badges "Love, peace and all that shit".  The boys picked up a cool Star Wars Guess Who Game in the Warehouse, and a Ben 10 fleece blanket to put over Roy's knee in the buggy.  We picked up some supplies for dinner and it seemed a long walk back up to the top of Queen Street!

Something which is difficult to talk about, and is largely swept under the carpet, by families caring for children with a life threatening illness is money, and the pressure of managing financially.  Both Sean and I have always worked to support our family.  Since Sam was born we have put our family first, reducing our working hours, and changing jobs so the boys would receive quality time.  Over the years we have managed to maintain somewhere between 1 and 1.5 incomes.  When Rory was diagnosed there was no question as to whether we would both continue working as we had.  He needed us.  However, we wanted to try and continue to manage on our own.  We have now been fighting with Rory for almost 7 months.  The number of hours we both work, and the wages we receive, has dropped away to almost nothing.  We expected it would.  It has been very hard accepting the donations people have made for Rory but they are now what keeps us afloat.  We will be forever grateful to all the generous and caring people who have supported our family.  WINZ has entered our lives, and this is a double edged sword.  Even though we have little income now we have to be mindful of our families overall income for the year as there is always the possibility we may have to pay back some of the benefit we have received at a time when we have nothing.  We are entitled to a benefit of $42/week (not income tested) as Rory has a life threatening illness, and a $55/wk disability allowance for lost wages.  We were receiving an accommodation supplement of $75 towards our mortgage but this has stopped as we no longer own the house.  Some weeks juggling our finances is almost more than I can manage.  As with everything I soldier on, and hope I will be able to make head and tail of it when Rory's treatment has been completed, probably with the help of a very good Accountant.