Rory Gardiner's Webpage

20, Oct, 2009

Tuesday 20th October 2009


The cost of chemotherapy is starting to show itself in Rory's test results.  We got news today we weren't expecting to hear.  One of the side effects of high dose Cisplatin (one of the chemo drugs) is permanent hearing loss.  Rory's hearing test results today showed he has lost the ability to hearing at higher frequencies within normal hearing range.  At this stage the loss is classed as moderate.  Rory will struggle to hear the greater the distance he is from the source of the sound, in a resonant area, when there is a lot of noise i.e. several people speaking at the same time.  This has implications for him in the classroom.  He will need to sit at the front to hear the teacher, and will need assistance in some learning situations.  Rory still has one cycle of chemo remaining.  Dr Stephen will assess the hearing loss and determine whether to alter the treatment Rory is receiving i.e. give him a lower dose of Cisplatin, to minimise any additional hearing loss.  It is a fine balance between maximising the effectiveness of the treatment and minimising serious physical damage to Rory.  At this stage Rory won't need hearing aids, but if the hearing loss increases he will need them in both ears.  The results of the cardiac echo, and the kidney function test, are not available until tomorrow.  The results will also determine how the fourth chemo cycle will proceed.  It is hard to hear Rory has suffered permanent damage as a result of the treatment which is being given to save his life.  After all he has been through he deserves to be in remission, to pick up his life where he left off (albeit after therapy).  But it is not going to be straightforward.  Andrew Law, the Neurosurgeon, said to us Rory's cancer will change the rest of your lives, and he was right.  The treatment is merely the beginning.  We have no choice but to take the punches as they come.  To get up again after each one.  Each day with Rory is a day gained.  I know there will be much I will have to learn, and much I have to do, to ensure he gets his chance. 

Rory had a good night's sleep and didn't vomit this morning.  Sean and Sam headed out for a run/ride while Rory made lego creations and I started in on the packing.  I can't find it in myself to get out and pound the pavement at the moment.  I run from the head and heart and when I'm struggling I can't get out there.  I've struggled a bit this cycle.  I feel worn out, less emotionally strong, and have been having regular headaches.  I think the year is catching up with me a bit.  I'm looking forward to some down time in the Naki over the Christmas break.  My good friend Mandy, our website guru, put some new photos on Rory's website.  In one photo Rory is wearing a bandana for this years Canteen fundraiser.  Rory chose a bandana with a maori motif of a manta ray on it, designed by Lisa Tamati the ultra-marathon runner from New Plymouth.  Sean is reading her recently released book which our friends Denise and Andrew sent us.  Maybe one day!

Sam went to school at RM House this morning while Sean and I took Rory for his hearing test, and his kidney function test.  For the kidney function test they inject a small amount of radioactive isotope into Rory and give him a blood test two, three and four hours after to determine how quickly the isotope is excreted from his body by his kidneys.  In between blood tests we packed, picked up Sam and had lunch, and fed the birds in the Domain.  The boys were completely camouflaged by pigeons in the Domain, and there were ducks and ducklings all around their feet.  The boys are always delighted by the tameness of the pigeons, their closeness, soft feathers and gentle voices.  

When we got back to the RM apartment after lunch a lovely care parcel was waiting for us from Jason, Wendy, Logan and Michaela Burns.  The boys delighted in opening their individual packs (Thank you our Naki cuzzies).  After Rory's third blood test we were caught up at Starship waiting for supplies so we were on the road north later than expected so traffic was heavier, and the trip slower.  We finally walked in the door at Grannie and Grandad Gardiner's at Whakapara at 7pm.  I think we are all a little shell shocked, and it will take us a few days to un-Aucklandise.