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Rory Gardiner's Webpage

01, Aug, 2009

Saturday 1st August 2009


 

Rory's not feeling so good today, and I can't say I'm surprised.  He has now been connected via iv for 36 hours, first for fluids, then for medication to minimise the impact of the chemo drugs, and then for the chemo drugs themselves.  Today he had three iv pumps running simultaneously.  He has eaten almost nothing, been sick twice, and rushed to the loo twice.  He has peed a lot which is expected as he is being given large volumes of fluids.  He has spent a large part of the day on the bed, wrapped in a blanket watching tv.  We have had short bursts of activity, reading books, spelling and maths, playing the Nintendo and Guess Who.  Dr Stephen came in this morning to check on Rory, and the nurse changed the dressing on his chest which covers the Hickman line.  The dressing is now transparent so you can see through it.  They have switched to using poly skin dressings as he has reacted to the adhesive from other plasters/dressings. 

It seems such a terrible way to pass time in your life, when all days are precious, for Rory lying in a hospital bed being pumped full of drugs and feeling sick, for Sean and I trying to pass the time, make Rory feel a little better, and watching him suffer.  I can't seem to feel elated about the MRI result.  Sean's smile was a mile wide and the news made him happy.  I don't know what is wrong with me.  I know it is good news, and we are incredibly lucky, but for me it is overshadowed by the fact this happened at all, my healthy baby had cancer and I never knew.  And he has to have this terrible treatment, and we have only seen the short-term side effects.  Plus the fact the MRI is not a crystal ball, it is merely a snap shot at one point in time, and no one can guarantee in six months, or two years, or three, they won't reappear, that he won't be taken from me.   I am powerless to do anything about it.  So I continue to take what we are given, and make the best of it, and not look too far down the path.  I think I am afraid to feel hope. 

I want to say a big thank you to Brenda C today, a txt arrived on my cellphone saying I had been credited with a pre-paid voucher.  This was followed by a call from Brenda who had been sensitive to the fact our phone calls increase while we are away from home, and wanted to help.