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Rory Gardiner's Webpage

12, Sep, 2009

Saturday 12th September 2009


 

I find it a real dilemma every day as I complete the blogs on Rory's website as to how open and honest I should be.  How much information should I share?  How much of myself, and my family's, thoughts and feelings I should lay out for the world to see?  It is never my intention to criticise, be ungrateful or hurt anyone.  I am eternally grateful to those who have supported our family.  For me the blogs are akin to a diary, albeit a censored one, to help me cope, as a record for Rory so one day he may understand, to inform those who are close to us, and in some small way to help those whose lives have been touched by the terrible thing which is cancer.

Today I feel angry and upset.  What was to have been a family weekend together, to lift Rory's spirits, and strengthen our little unit, has turned into a disaster.  Sean and Sam arrived yesterday afternoon.  For an hour and a half Rory's ward room was a hive of activity, sound and movement, relief from a week of illness.  It was the first opportunity Rory had to be in his brothers company for two weeks.  He hasn't even so much as spoken to another child.  I listened to them chattering in the unique way small boys do, and I was so glad Sam was here.  I took Sam out for some fresh air late in the afternoon and as we got back to RM House he was struck down with diahorea.  I was horrified, frightened and angry.  Apparently one of Sam's friends had a tummy bug this week.  Sam had spent time in close contact with him and no one had told Sean the seriousness of it.  Apparently the tummy bug is going around the community.  Unknowingly Sean bought Sam down, and we let him spend time with Rory.  Diahorea in a normal healthy child is a minor bump in the road.  For a child with no immunity struggling under the burden of a viral and potential bacterial infection it can be catastrophic.  It has the potential to kill Rory.  I feel a huge sense of fear Rory will get worse over the coming days so I cannot leave him even though I know I need a break.  Sam cannot stay, he is a risk to Rory, to the other children on the ward, and to those at RM House.  So Sean has taken him home.  I feel really bad for both boys.  I am aware what has happened has been hard on Sam, he feels angry, robbed, and responsible.  He can't be with his brother, or his family, and he feels it is his fault for being sick and placing his brother at risk.  There have been tears, and a lot of explanation and comforting.  I wish someone had said something if there was a chance Sam could have been exposed to a tummy bug. 

To continue with honesty, it is hard keeping a relationship going in our situation.  Sean and I spend a lot of time apart, and the stress, pressure and worry is at a level neither of us have experienced before.  The episode this weekend has strained things further.  I cannot be responsible for keeping things going, and being on the pulse, at home.  In my absence it is Sean's responsibility.  I have thrown everything I have into fighting with Rory.  Sean has to be surrogate mother in my absence, as I am surrogate father in his absence.  Sean is also having difficulty letting go of what was our lives.  Sean is a hunter, it is more than his job, it is more than his passion, it is who he is.  He has worked as a contractor, on his own, for many years in Northland.  He has built up a client base, and taken pride in completing work to a high standard.  Work is hard to come by.  Work keeps him whole.  Sean is afraid of losing the work, and afraid of losing himself.  He still has contracts on the go and can't seem to put them aside.  It has been possible for him to continue to some degree until now.  The hill is now a little too steep for Rory and I to climb alone.  It is too continuous, too draining, too frightening, and it comes with additional potential costs.  I have been reading about mothers who shoulder the majority of the burden caring for children with life-threatening illness.  There is a significant risk to their mental health; depression, breakdowns, and addiction.  I do not want to be one of these women.  Sean is also very worried about providing financially for our family.  I have long since stopped caring about where money will come from.  I have told him he has to stop worrying about money.  If we lose everything and Rory pulls through, if we all pull through, it is worth it.  Many families at the house are on the benefit as they fight, and if we have to do this so be it.  Nothing for us is as it was. 

Rory continues to fight.  It breaks my heart everyday seeing what he has to endure.  I never let him see how I feel inside.  I force it down.  I act as though everything is normal, routine and fine.  I put a smile on my face, I try and be funny (when everyone who knows me knows I have no sense of humour), I am patient, and I love him as though every day is his last.  Sean stayed the night with Rory last night.  He has been running a low grade fever (38 degrees) since dinner and it hasn't abated with pamol.  The Nurse has taken blood cultures to check for infection, but it may be the Rotavirus.  He has been started on iv antibiotics as a precaution.  This morning he had a large vomit after three and a half day break.  The Nurse changed the Insuflon in his leg (from right side to left) and I administered his GCSF.  His white blood count is only 0.16 this morning.  His haemoglobin is also falling so he will be given a blood transfusion today, and will likely need platelets tomorrow or Monday.  The Doctor is keen to keep increasing his ng feed (milkshake) and reduce the TPN (intravenous feeding).  The Nurse will give him anti-nausea medication.  He is very tired, and is sleeping a bit during the day now.  All I can do is sit here and watch. 

Since Thursday night Rory's tummy has been very sore when the pain relief has worn off so the Nurse is now giving it regularly. Yesterday Rory's weight was down another 200 grams to 22.45kg.  He received a push of the chemo drug Vincristine.  By the end of the day Rory's ng feed was up to 10ml (2 teaspoons) per hour.  Rory remains in isolation, and my movements are restricted on the ward i.e. stay out of the family room/kitchen, sluice room, and play room.  Each day is a new challenge.