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Rory Gardiner's Webpage

06, Aug, 2009

Thursday 6th August 2009


 

Rory was a bit better yesterday morning, and when I arrived at the Ward he was drinking water and managed to eat a small bowl of ricies.  We were all hoping he could be discharged to RM House as he had spent six days in the same room on Ward 27b.  The Nurse disconnected the IV fluids and for the first time he was line free.  Sean and I gave him a shower and he got dressed into his clothes.  Dr Stephen and Nicola came to see him and were happy with his progress.  Outwardly it appeared like we were getting our old Rory back again, but a battle is going on inside his body.  Nicola showed us his blood test results (taken daily) and it was very sobering.  The chemotherapy drugs are killing off his red and white blood cells.  As of today he is neutropenic. 

Rory's white blood cells are so low they are unable to act as primary defense to fight off infection by destroying bacteria in his blood.  Therefore he is at high risk of infection so cannot be around other people, a couple of healthy people is fine, but no more.  It essentially means keeping him isolated, from the RM House classroom, and from other people in general, for a large proportion of the four months.  My heart went out to him.  Nicola also said he will develop anaemia, bruise easily, and need transfusions of red blood cells and platelets.  We have to monitor his temperature.  A high temperature is the first sign of infection and he will need to be re-admitted to the Ward for IV antibiotics.  He has to have blood tests every two days, and his weight will be recorded.  The naso-gastric tube is likely to be needed sooner rather than later.  In addition he will receive daily injections of GCSF, a hormone to stimulate his stem cells into action to rebuild his immune system.  The Nurse put the port for delivering this into his right thigh (a fine line is inserted with an injection and it has a little plug/cork on the surface of his skin), and taught Sean and I how to administer the GCSF injection into the port so Rory doesn't need daily visits to the Ward.  Rory will need these injections until his blood test results show his immune system is recovering (10+ days).  The Nurse also changed the dressing on Rory's chest, and gave him a little pouch to wear around his neck to put the Hickman lines in.  She also changed the dressing on the shunt wound.  Thankfully this continues to heal, although they have warned us it may break down due to chemo.  Rory has had an allergic reaction to standard dressings (red spotty rash) and will now only tolerate polyskin, a hypo-allergenic dressing. 

 I left the hospital at lunchtime, once Rory, Sean and all the gear was settled at RM House.  Leaving is like something is being physically torn from you, and it leaves a gaping hole.  I must have said goodbye about 10 times, and as I was driving out of the hospital grounds I was in tears.  For me it almost feels as though Rory is a baby again.  Since he was diagnosed I have been with him, within touching distance, almost constantly, joined by an invisible umbilical cord.  My life has been totally dominated by his needs, by caring for him, by supporting his life.  When I am away I find it hard to breathe, to eat, to sleep, and to concentrate.  I find it as hard to be away as to be there.  When I am there l sometimes feel like I can't make it through one more minute unless I get home to breathe, and let the pressure out. 

I picked up Sam from school and he was angry and sullen.  Soccer practice was on and he didn't get to go as I had to unpack, restock the house, sort through 7 days absence in our lives, and exercise.  I was so happy to see him, I rushed up and hugged him.  His mood made me a little angry and we had words.  I understand his life is no longer as he wants it, and Rory is the cause of this and the focus of a lot of the energy, but he has to accept this and adjust, as we all have.  The treatment is only temporary.  Sean and I are trying to do the best we can, and ensure Sam is cared for, and given adequate time.  I took him out for a training run for cross country, we covered 5km, 3km running and 2km walking for a warm down.  It was good for both of us. 

When I picked Sam up from school I was greeted by Whaea Danielle who showed me the new Kia Kaha Rory wrist bands Dargaville Primary has produced.  They are black with green writing and are really neat.  There are two sizes, adults and childrens, and they are $4.  The office ladies gave me a box to spread the word.  If anyone is keen on purchasing them see the home/front page of Rory's website.   

Nana and Poppa called from Los Angeles to see how we all are.  They left on their annual holiday the day chemo started.  Nana was in tears on the phone when she heard how rough it had been for Rory.  It is hard on them, they feel helpless.  I reassured them we are ok.  Carol from the Child Cancer Foundation called.  She has been checking up on Rory, and is going to call in for a visit next week. 

It was pea soup fog and 2 degrees this morning as I drove across to work at Whangarei District Council.  I admired the spider webs glistening in the trees and flax as I drove.  Rory has always been interested in spiders so a couple of years ago I bought him a NZ identification book.  I would regularly find him pulling it off the shelf to try and determine what type of spider he had found outside.  I miss those days.  Sean said Rory had a restless night.  He is still suffering from leg pain due to the chemo drugs, and I think psychologically has been affected by the events of the last week.  Sean said getting him to eat dinner last night and breakfast this morning was a struggle, and he is still very tired.