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Rory Gardiner's Webpage

28, Jan, 2010

Thursday 28th January 2010


 

It was clear.  The MRI of Rory's brain and spine was clear.  There is no visible evidence of cancer. 

I had to ask Dr Stephen three times if he was sure.  I had prepared myself for the worst so it was hard to believe the best.  Sean was ecstatic and I was stunned.  I wish I had seen the MRI report, concrete evidence of what we were told as a small part of me fails to believe.  It was so hard waiting for the news.  I lay in bed on Tuesday night and thought about the report, a stones throw away at Starship, in direct view out of our window.  There was no way of getting to it to find out what it contained.  As we sat in the Oncology clinic waiting room I started to second guess the result, was Dr Stephen late because he was preparing himself to tell us bad news?  And when he greeted us I tried to decipher his body language and the meaning behind his words?  It was hard to breathe.  When the door closed on the meeting room I couldn't contain myself a second longer and blurted out the question "what was in the mri?"  Hearing it was clear brought a rain of emotions; relief, gratefulness, joy, elation ... and the disbelief.  It was wonderful news.  With it came the hard realisation we will only be able to live three month pieces of life at a time.  While Rory's scan is clear now it may be a different result at the end of April, or July, or October.  So while there is cause for elation and celebration it was tempered with the reality we face.  We will take all the good news we can get, and be grateful for each subsequent block of life Rory can live.  We are determined not to waste a minute of it. 

I hardly know where to begin to cover the events of the past four days.  It has been like being swept up in an avalanche, and we have only just been able to keep our heads above the snow to breathe.

On Monday Sam and I went for our usual run/ride.  It was our fourth day beating the feet and I had to drag my legs around our 10km circuit.  We avoided the bush tracks as Sam was a bit nervous because there were two murder fugitives on the run in New Plymouth.  After a quick breakfast we took Rory to the Aquatic Centre for therapy and a play.  Both boys love the water, and piggy in the middle with a ball is a big hit.  Rory's kicking with a flutter board has improved, he is trying to kick from the hips rather than bend at the knees.  After lunch we dropped the car at the panel beaters to be fixed while we were away, and picked ourselves a container of strawberries.  At 3.20pm Rory and I flew to Auckland.  Sam was a bit down about us going without him.  He had waved goodbye to Sean three weeks previously and was now waving goodbye to Rory and I.  Rory loved flying.  He was very excited, and enjoyed the take-off and landing, and looking out the window at the world below.  He was a real seasoned traveller drinking his pottle of water and eating Pringles while looking through a magazine!  Sean picked us up from Auckland airport.  Rory spied him through the glass before I did, and called out 'Dad', as he increased his speed to get through the exit gate.  We spent the night at Ronald McDonald St Martins (our old apartment at the Waldorf) as RM House was full.  It was a hot night and anxiety made for a pretty restless sleep.

On Tuesday we all walked across Grafton Bridge to Starship (Rory included - for the first time) for a long day of tests beginning at 8.30am.  Our first stop was the Oncology clinic where a Doctor put an iv line in Rory's arm.  It had been a couple of months since Rory had an iv line and he had completely psyched himself out of the needle.  He cried and struggled and screamed.  Sean and I had to hold him down.  It took the Doctor two attempts to get a line into a vein inside his right elbow.  He was sore and upset and holding his arm as we made our way to radiology where he had his kidney function test (GFR).  At radiology the Doctor injected a small amount radioactive material into his iv line which passed through his blood stream and was broken down by his kidneys.  This breakdown is measured by blood tests at 2, 3 and 4 hours.  I gave Rory some pamol to ease his pain and relax him a bit.  The cardiac/heart echo was next.  Rory lay on the bed and the technician used the ultrasound and gel to take images of Rory's heart.  The MRI scan followed..  Rory lay on the bed with the mask over his head and was slid into the MRI machine.  Sean went into the room with Rory and stood by the bed.  Rory could see him via a mirror on the mask.  I was ushered out into the waiting room.  Rory was in the MRI machine for 45 minutes.  Even though it was noisy with ear plugs in his ears he fell asleep.  The Technicians took a series of images, then injected dye into Rory's iv line and took another series of coloured images.  Unfortunately the dye blocks the iv line so Nurse Wendy couldn't draw any blood from it for the 2hr GFR test.  As a result she had to remove the iv line and get a Doctor to draw blood from another vein using a butterfly.  Rory was not happy about this and it took several attempts to get the volume necessary.  We had a 45 break for lunch at the RM Family rooms on level three at Starship, then it was back upstairs for the 3hr GFR blood test.  Rory had calmed down a lot and sat in the treatment room quietly and patiently while the Doctor drew more blood.  While we waited for the timing of the 4 hr GFR blood test Rory collected his Beads of Courage (34 for the five weeks he had been away).  A different Doctor drew blood for the 4hr test and left a left a large purple bruise on Rory's right wrist.  We were all glad to see the end of the blood tests.  Rory's arms look like pin cushions with prick holes, bruises, and a rash from the alcohol wipes.  Both Sean and I felt sorry for him, and angry at how he had been treated.  At 2.30pm Rory visited Audiology and had his hearing aids fitted and tested.  They are tiny.  A clear piece fits in his ear connected to the receiver/amplifier which sits behind his ear by a fine clear cable.  The hearing aid amplifies sound so Rory is able to hear sounds he struggled to pick up previously i.e. s, th, f, k in words.  He was blown away by what the hearing aids did.  His face lit up, and he was full of excited chatter.  He could hear other conversations, wind, cicadas, and his own chewing, sounds he obviously couldn't hear before.  For us it was a real awakening as to the degree of hearing loss he has suffered, and what he has been missing out on.  I think because he manages on a day to day basis we forget he has suffered hearing loss, and fail to understand how his perception of the world has changed as a result of this.  It was wonderful to see him illuminated.  He doesn't seem phased at all about wearing them.  The last stop of the day was the Respiratory clinic where Rory had his lung function tested.  This was done inside a chamber with a series of tests which required him to blow into pipe with a peg on his nose.  He was too tired to walk back to the Waldorf so we caught a taxi.  After a rest we ponied him down to the top of Queen Street and we had Japanese for tea.  Rory enjoyed the experience of eating out and is a big fan of sushi.  We picked up Bolt on DVD for him to watch when we returned to the Waldorf.

On Wednesday morning we were all awake early and there was plenty of nervous electricity in the apartment.  Rory finished watching Bolt and once we were packed and ready we caught a taxi to RM House where Sean's truck was parked, and loaded up.  To pass the time we had a walk in the Domain and fed the ducks.  A terrible thing happened while we were in the Domain.  There was a single duckling amongst the bigger ducks and Rory was focused on feeding him bread.  When the bread ran out the duckling started calling to find his mother.  A black backed gull on the fringe of the group ran/swooped in and grabbed him, alighting a few metres away.  It proceeded to shake, bash and peck the duckling.  We ran to help but the gull picked up the duckling and flew to the other side of the lake.  We all ran around but by the time we got to the other side the duckling was dead.  I felt sick, and a great deal of fear.  I worried it was a sign to indicate the news to come for Rory.  We picked up the duckling and placed it in the garden, Rory said a karakia and we washed our hands to cleanse the spirits.  It may sound like strange behaviour but in the charged place we were at it seemed appropriate.  Time passed slowly until we saw Dr Stephen at the Oncology clinic and he gave us the good news.  Once we had taken some deep breaths there was much to discuss.  The results of Rory's other tests were good.  There has been no deterioration of his kidney or lung function since the last tests (the cardiac echo wasn't available).  His standard blood test was fine.  He will have to keep taking Cotrimoxazole to protect his lungs during weekends until the end of March.  Dr Stephen gave me a medical paper which describes the trial (SJMB96) which resulted in the treatment protocol Rory received.  134 children took part in the trial over a period of seven years, 48 of them were high risk like Rory.  5 year overall survival for those in the high risk group was 70% and the greatest likelihood for relapse was 1-3 years after diagnosis, with a reduced risk from 3-5 years.  Relapse is more likely at the site of the primary tumour, which for Rory is at the base of his brain (cerebellum).  The protocol resulted in a significant increase in survivorship for children with medulloblastoma, but was very sobering, and dampened the good news.  With the clear scan a tiny little part of me thinks maybe Rory is going to be one of the lucky ones, and this fills me with a joy I can't describe.  I have to force myself to look away from this seed of hope to cope with the road ahead of us.  With everything I have I hope one day I can let this small seed flourish into a huge tree which wipes out the heart ache which has occurred.  We made plans with Dr Stephen for Rory to have his hearing tested and hearing aids checked at the end of February, and for a Neuropsych evaluation to be done.  I was shocked when Dr Stephen said there wasn't a Neuro-psychologist available in each major hospital i.e. Whangarei, Taranaki.  Children suffer educational, social and emotional trauma as a result of a variety of illnesses i.e. cancer, accidents, disorders, disabilities.  I would have expected there to be someone available to evaluate them, and recommend support and assistance for the children to families, teachers, Doctors, and social workers.  But there is not.  Rory will also have his eye sight checked at the end of February.  We discussed Rory's thyroid function.  Due to the radiation he is at increased likelihood of thyroid dysfunction and tumours.  His thyroid function will \ be checked one year after his first clear scan which occurred at the end of radiotherapy (start July 2009).  The check is done via three blood tests for thyroid, cortisol and growth hormone.  If he is found to be deficient two are artificially replaced using tablets, and one via a daily injection into his leg.  I left a Ministry of Education form for Dr Stephen to complete so we can apply for High Health Funding to support Rory at school, and requested a clinical report for the travel insurers of Rory's wish.  Once we finished with Dr Stephen we hit the gap.  We were keen to get out of Auckland and to the Naki.  We arrived in the Naki hot and tired at 5.30pm.  It was wonderful to collapse within the warmth, support and security of my family with a good result after having to be strong for three days.  Sam was glad to see us.  He had spent the previous two days almost continuously in the company of his cousin Logan.  They are both 10 and enjoy being together.  They had been to golf with Nana, spent hours at the Aquatic Centre, wrangled it so Sam could stay the night at Logan's up under the mountain, and watched the Toothfairy at the movies.  (Thank you Jason and Wendy for taking Sam under your wing while we were away.  I know he was feeling insecure and anxious). 

Today (Thursday) has been an absolute whirl wind.  After two days on edge and without exercise Sean and I headed out for a run/ride with Sam.  18kms later I had burnt off the last of my edginess.  It was a morning of mayhem at home.  Sean spoke to one of the Managers at Taranaki Regional Council and they cannot provide a firm date as to the position will be available.  It may be a month, it could be five.  In the absence of a firm date the boys and I will be returning north with Sean this weekend.  We have discussed continuing on in separate locations but it is hard for Sean, and the boys being separated.  Quality time together is something we do not take for granted.  If it is lost there is a chance it will be lost forever.  Once we received this information there was a stack of loose ends which needed tying; schooling, Starship, Physio, Ministry of Education, my work.  Plus Sean had a stack of administration to attend to.  After lunch we met with John the Halberg Officer at Sport Taranaki to discuss a funding application to the Halberg Trust for the conversion of Rory's bike to a trike.  The Trust provides funding for lessons or equipment to ensure children with disabilities get equal opportunities/access to sport within the community.  I tackled this website blog which has taken a good couple of hours.  The boys have been patient all day so we took them for a swim at the Aquatic Centre before tea.  They even managed to coax me into the outdoor pool as it has been a hot sunny Naki day.  We have enjoyed a decadent dinner, utilising the vouchers for Hell's Pizza which Sandy gave us.  She even gave threw in two dessert pizzas (Thank you so much Sandy the food was delicious and we all have full bellies).