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Rory Gardiner's Webpage

18, Jun, 2009

Thursday 18th June 2009


 

It was hard to hear about the chemotherapy today.  It's going to last a minimum of 16 weeks (longer than surgery and radiotherapy combined), and if Rory gets to go home at all during this time it will 'be a bonus' according to Dr Stephen.  As Rory is considered high risk (he had a second tumour and it wasn't fully removed) so he is having an intense course of chemo over a shorter time period.  He will have four cycles in total.  During the first week intravenous fluids, chemotherapy drugs, and finally his stem cells will be given, then during weeks 2-4 he will be monitored closely.  If his system copes during week 2 or 3 we may be released from the Ward to stay at Ronald McDonald House while he is monitored until the end of week 4.  This cycle is repeated four times.  The risk of getting an infection at least once during the four cycles is high as he will be neutropenic (low white blood cell count so can't fight infection) from two weeks after treatment starts.  As well as coming from the outside infection can come from within due to an imbalance in good and bad bacteria inside his body.  He is likely to feel nauseous, and if he loses >10% of his weight they will put a tube up his nose to allow him to be fed an intravenous 'milkshake' over night.  His remaining hair, including his beautiful eyelashes, will fall out.  The list of potential side effects is horrible, and the doctors try and detect them before significant damage is done.  Prior to each cycle he will have to have a hearing test, and tests for heart, lung and kidney function.  At this stage he will be returning to the hospital on the 29th of July.  Surgery to put the central line in his chest will occur on the 30th, and chemo will start on the 31st.  He has coped so well so far.  He is still active, alert, feisty, bright, cheeky and strong of spirit.  I feel afraid for him for what is to come.  He has endured so much already it doesn't seem fair to make him go through more.  But we have no choice, and we have to take what is being recommended if he is to live.  I already see a maturity in him that wasn't there before.  His illness seems to have made him wiser, more tolerant, more understanding and accepting of some of the ways of the world.  He is a cross between Yoda and Anakin Skywalker if you know Star Wars well. 

 

It has been an interesting day.  Rory completed radiotherapy session number 29.  He saw Dr Simon (of the yellow shoes) who checked his shunt and head wounds and said all appears ok.  We caught up with Nurse Steph for the weeks courage beads and we were amused to see her wearing a mask because she had a cold.  He completed a physiotherapy session with Racheal and definitely missed Mat's company.  Nothing makes physical activity more enjoyable than a little testosterone between boys, regardless of their age!  He rode the bike today without the training wheels.  It was a great insight into how he is doing.  He had the momentum and balance largely sorted while going along the straight, but turning corners it all started to break down.  Racheal and I both held onto him and I couldn't tell if it was making it better or worse!  He was a very capable bike rider before the cancer was diagnosed and I think with a little practice he will be again. 

 

We met with Paediatric Oncologist Dr Stephen Laughton who will be taking over Rory's care for the next 5 months.  He filled us both in about the chemo.  Rory had only one question, he wanted to know if it is going to hurt. 

 

We had a special visitor when we returned to the House.  A few weeks ago out of the blue a lovely woman named Lyn Murray expressed a desire to try and help Rory's wish come true.  She had come across his website and wanted to help.  Lyn has a high powered career and has the ability to facilitate connections.  We have nick named her Money Penny from the James Bond movies and today I thought the nick name was appropriate.  Lyn is an attractive, professional, intelligent woman with a warm heart.  It was lovely to meet her and chat.  She spoiled us bringing a parcel for Rory, Sam and I.   We are grateful for the support people like Lyn, who don't know us, have given our family. 

 

Rory squeezed in half an hour of school today and finished his bag bird.  It looks great.  After lunch we went to the movies, complete with popcorn and lollies, to see Night at the Museum 2.  On our way home a strange thing happened.  As we were walking through the Domain an elderly maori gentleman came down from the stand and stopped in front of Rory, he asked if I would mind.  I said no.  He asked Rory his name and took his hand.  Then he asked Rory to hold his hand over his own not touching, then for me to put mine on top.  The man took his bottom hand and shaped it around Rory's head, then down his body to touch his tummy.  He was speaking or making noises at the time, I'm not sure which.  He held this position for a little while, looked us both in the face, then turned and left.  Rory and I had a long talk on the way back home about tohunga, or maori healers.  Who knows, maybe what he did will make the difference.