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Rory Gardiner's Webpage

01, Aug, 2010

Sunday 1st August 2010


We received the best news this week .... the MRI of Rory’s brain was clear of cancer.  It is the third clear scan (Jan, Apr, Jul) since he finished treatment in December.  I always manage to remain calm until I enter the waiting room of the Oncology ward at Starship.  Then the butterflies start, and I imagine the worst.  Sitting in front of Dr Stephen (Rory’s Oncologist) I think I appear outwardly in control, but inside I am a mess.  I always hold my breath after asking ‘the’ question, until I hear the result.  It is a kind of torture.  We were ecstatic it was good news.  Dr Stephen remains cautious.  He is not willing to relinquish Rory’s care to a regional hospital yet, and will only extend the space of time between scans by one month (4 months instead of three) so we will return to Starship in November.  We are grateful to be given another four months of life with Rory (hopefully on the path of many more). 

Rory was incredibly brave and patient at the Hospitals.  We got up early on Tuesday and caught the first flight to Auckland from New Plymouth airport, seen off by Sean and Sam.  On arrival at Auckland it was straight to Greenlane Hospital.  Three nurses from the Endocrinology team administered the hormone tests over a period of 4 ½ hours.  Rory was nil by mouth and starving by the time the tests were complete.  The nurses put an iv line in his arm (which took three tries), infused iv medication, then took blood samples at regular intervals.  At one stage they had to inject an extra drug into his stomach.  We passed the time with the Nintendo, reading a story, doing a puzzle, and playing hangman.  The nurses took extra tubes of blood for the tests Starship requested.  After lunch at Greenlane we got the taxi to drop us in Newmarket (half way to Starship) so we could look in the Smiggle shop, and stretch our legs.  At 3pm Rory had an appointment at Starship Audiology.  They added a button to his hearing aids to allow him to dampen down background noise in loud situations.  We finally arrived at Ronald McDonald House at 4pm.  We met Moneypenny (aka Lyn) at 4.15pm.  She accompanied us to Rory’s MRI, and stayed with him in the room while it was done (I couldn’t as I’m pregnant).  It was hard for me to see him lying on the table and not be able to go into the room.  It was like he was in trouble and I couldn’t reach him.  I found it quite distressing.  Rory and Lyn seemed to have everything under control as they were relaxed when they came out (thanks Lyn).  The MRI staff took the iv line out of Rory’s arm (it was left in as they need it to inject dye in for the scan).  Lyn joined us for a family dinner at RM House.  Rory and I collapsed into bed early, drained by the events.

Wednesday was an equally big day.  Rory and I were awake early (5am).  After breakfast we went for a walk in the Domain and fed the pigeons and geese.  At 9.15am we met Dr Katherine, the Neuropsychologist, to update her on Rory’s progress, and obtain her advice on ways to support Rory at school, and in general i.e. confidence, making friends, overcoming his fears.  I gave her a copy of the Individual Education Plan (IEP) I had drafted for Rory.  At 10.30am we saw Dr Stephen and got the great news.  It will take 2-3 weeks for Rory’s immunology results to come back.  The immunisations he received in childhood are likely to have been compromised by the treatment he received.  The latest round of blood tests will tell us which immunisations he will require again from his GP.  At midday we met with Gavin and Julie from the Huapai Lions, and Fiona from RM House.  A wonderful opportunity has come up, due to their generosity and that of AirNZ and the Orlando Florida USA Lions for Rory and our family to visit Disneyworld in Florida in late September.  To raise money for the airfares an extremely rare flight deck experience has been donated for auction.  The lucky winner will be able to fly with the Captain on the flight deck for a return journey to Wellington or Christchurch.  To read about it, or bid, the link is   http://www.biddingforgood.co.nz/Unique-Flight-Deck-Experience,name,100114,auction_id,auction_details   

Over lunch at Muffin Break we talked about the details.  It is an amazing offer and we have to keep reminding ourselves it is real.  Gavin and Julie gave Rory and I a ride back to Greenlane, and a Disney photo album to store our holiday photos in (thank your Gavin and Julie).  At 2.30pm we saw the Endocrinologist, Dr Craig Jeffries, who told us Rory’s Cortisol and TSH levels are currently in the normal range.  However his growth hormone is very low.  Dr Craid recommended starting Rory on a daily dose of growth hormone (injection in the stomach) to ensure he grows.  It is unlikely his growth will be at the ‘normal rate’, and Rory be short due to radiation of the bones in his spine.  Prescription of growth hormone needs approval of a special Committee.  It is very expensive (the cost is covered by the government) and is an illegal substance for athletes.  As well as enhancing growth it promotes muscle production and boosts energy levels.  A nurse will teach us how to administer it (Rory will do it himself in time), and each dose is carefully measured.  We will monitor Rory for adverse side effects.  The Endocrinology team at Greenlane will see Rory quarterly to monitor how his body responds.  Sean and I are both a little nervous about giving Rory a drug which enhances cell growth, in case it enhances the growth of cancerous cells.  The doctors have told us there is a ‘theoretical’ risk which hasn’t so far been observed in reality.  As a precaution they wait for a year after the first clear scan before administering the hormone.  Rory’s first clear scan was a year ago after radiotherapy.  It is likely to take two months to obtain approval, and receive the training and the growth hormone, before Rory can start on the programme.  He is likely to be on it for life (on a maintenance dose when he is an adult).  From Greenlane it was back to Auckland airport where Rory and I caught a flight to New Plymouth.  Sean and Sam were waiting for us.  Cooking tea was out of the question so we decided to have Hell’s Pizza.  We caught up with owner Sandy and gave her the great news.  She gave us $85 her customers had donated (thanks Sandy).  We want to thank all of you who emailed, called, txted, or sent positive thoughts and best wishes for this week.  Your ongoing support means a lot to us.

The remainder of the week has been less eventful.  On Monday I stayed at school with Rory all day as his Teacher Aide was sick.  In the afternoon the boys went to kapa haka.  Rory hung in there for 45 minutes but was then pooped.  It was back to school on Thursday after our trip to Auckland.  It never occurred to me or Rory to take a day to recover, we just picked up and carried on as normal.  Sean was glad to spend a day in the field to burn off some energy.  He found it very hard being away from Rory during two very intense days of tests.  I stayed at school for most of the day as Mrs Bracey was still sick.  Mrs Frost covered some of her time.  The Middle group children ran the school assembly, and did a great job.  After lunch, while the class was on the fitness circuit, Rory got to choose two friends to play ball games with.  He enjoyed this immensely.  After school Sam was off to burn some energy at soccer practice.  On Friday Mrs Bracey was still unwell so the other Teacher Aides supported Rory while I went home to play catch up.  Sam brought his mate Robert home after school so the boys enjoyed having someone new to join in their games.

Sean and Sam have spent the weekend away, driving north to Whangarei yesterday to pick up the remainder of our gear.  They stayed Saturday night at Whakapara with Grannie and Granddad Gardiner, and are driving home late today.  Rory and I were disappointed we didn’t go, but it would have been too much for both of us.  Rory and I had a busy day out and about yesterday.  The highlights were; the Inglewood High School book sale where we picked up a few treasures, choosing an outfit to bring our baby home in from the winter sales, and going to see Toy Story 3 at the Movies.  It is a soggy, cold and windy day today.  Rory and I had seen the weather forecast so headed out early while it was still dry.  Rory covered the 5km to the supermarket (and home) for a few supplies on his bike, while I walked.  The rain started to fall as we returned to the driveway.  We have spent the day inside.  Rory finished building the cool lego set Lyn gave him (thanks Lyn), has made several thank-you cards, helped me bake a cake, has watched a DVD, and played board games.  In between being side tracked there always seems to be plenty to keep me occupied!