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23, Apr, 2010

Friday 23rd April 2010


My brain is whirling.  I’m going to have to slow it down so I can pick apart what has occurred over the past three days.  The most profound occurrence for Sean and I was a discussion with Mr Law, the Neurosurgeon who operated on Rory.  Andrew Law is a gifted surgeon, one of NZs best.  He has a forthright bedside manner, upfront and honest.  He lays it all on the table, the good, the bad and the ugly.  We respect him a great deal and appreciate being treated this way.  We know we have heard the truth.  Andrew told us, at this point in time, Rory is doing far better than was expected, than was likely, given his diagnosis.  Rory had Grade 4 cancer (highest risk) in two locations in his brain.  At this point in time he has no residual disease, and there is no evidence of reoccurrence.  Andrew said there isn’t a better place for Rory to be in.  Sean and I should focus on this and put our energy into giving Rory as normal a life as possible.  We need to push away the thought we are one MRI away from relapse.  This was a comfort for us to hear.  The MRI result was fantastic and a huge relief, but it’s hard not to think we have only been given three months, rather than a lifetime.  We told Andrew we are grateful and we don’t want to take this for granted, but we are aware relapse is a real possibility.  While we don’t dwell on it we want to be informed in case the unthinkable occurs.  Andrew told us the likelihood of Rory surviving relapsed medulloblastoma is close to nil.  Tumours most frequently re-appear at the original site, or pop up simultaneously in a number of locations.   He would operate if possible, and chemotherapy might be able to ‘mop up’, but it would only buy time.  The big gun for medullo is radiotherapy, and Rory has had the maximum dose of radiotherapy he can have.  It is hard to discuss what ‘might’ occur but he said the emphasis would likely be on quality of life, and maximising the time left together.  He said we would need to consider how, whether, and for how long, we would want to fight given the very slim chance of survivorship, and the cost to Rory i.e. time spent in hospital recovering from operations or sick from chemo.  We asked Andrew whether going overseas for treatment unavailable in NZ would make a difference.  He said he has watched families throw in their lives to chase false hope, and many families have disintegrated.  He asked us whether we would be prepared to remove Rory from everything he knows if it was likely he would have limited time left.  It was a very frightening, sobering discussion, but one I am glad we had.  Some of what Andrew told us we were aware of, but he helped us complete the picture.  Currently we are all in the light, but if relapse occurs we will be in darkness.  Sean and I are still processing this knowledge.  We have decided to tuck it away in the hope the day will never come. 

Rory did an awesome job with his MRI.  At the Oncology clinic the doctor felt the veins in Rory’s arms with her fingertips then went straight in with the needle.  Rory never moved or made a sound.  What a trooper!  Inserting the iv line was quick and relatively painless.  The nurse drew some blood for Rory’s tests.  Sean went in with Rory while he had his MRI.  They take a series of photos, then inject some contrast dye into his arm, then take a second series of photos.  Rory lay still in the platform while the machine whirred and clanked around his head.  The MRI was taken of his brain only, not his spine, as the last MRI was clear.  A family dinner was provided at RM House when we were finished. 

On Wednesday morning we met with Dr Katherine, the Neuropsychologist to discuss the allocation of assistance for Rory at school.  You wouldn’t believe it but there is another form from MoE to complete, and another process to go through, before the hours are allocated!  It is far from over.  We discussed with Katherine how best to transition Rory to a new school should Sean be successful with his job application, and the recent writing assessment Rory had undertaken.  We had a sobering discussion about his potential, but as he cannot be formally assessed until December it is speculation. 

We saw Dr Stephen at the Oncology clinic after waiting a nerve wracking 30 minutes for our appointment.  The MRI was clear!  We always let out a big sigh of relief, tension and fear.  Stephen does not want to space the MRIs further apart yet so we will return near the end of July for the next one.  Rory’s blood results were all within normal range so he can stop taking the Cotrimoxazole on the weekends (antibiotic to protect his lungs).  Rory has gained weight, but has only grown 1.5cm over the past year (the average growth rate for his age is 5.5cm).  When we return to Auckland in July Rory will have a series of endocrine (hormone) blood tests done.  There is an 80+% likelihood he will need growth hormones.  He will also have blood tests to check him immunology to chicken pox and measles, and to check his level of Vitamin D. 

 After we saw Dr Stephen Rory had an x-ray done of his wrist to measure his bone age.  The deviation from his chronological age will tell us how many growing years he has left i.e. if his bone age is 7 he has more growing years left than if his bone age is 9.  This data will feed into the endocrinology matrix.  We grabbed a quick lunch and drove out to Greenlane Hospital so Rory could have his eyes checked and tested.  I have never seen a waiting room at a medical centre look like the Opthalmology acute and emergency clinic at Greenlane.  There was a queue from the elevator to the front desk, and there were easily over 100 people standing and sitting in the waiting room.  They were all ages, all nationalities, and with eyes in various states of condition.  We had an appointment for the tests at 12.45pm and to see the specialist at 1.15pm.  The two tests were done by separate staff, spaced apart by much waiting.  We finally got to see a specialist at 3.15pm, and not the one Rory was scheduled to see.  The clinic is a classic example of the medical system gone wrong.  There were way too many patients for the time allocated, and too few staff.  We felt sorry for those parents trying to manage babies and young children.  Rory’s eye sight, his depth perception, and peripheral vision are within normal range.  He has no cataracts (side effect of treatment).  He still has some weakness in the 5th and 6th nerve (which you can see if he looks out to the side as his pupils shake a little).  We were glad to hear this news.  The doctor recommended keeping an eye on his vision and having it checked once/year.  We were very glad to escape Greenlane! 

Our next stop was the Auckland Domain where Rory received his first Nordic walking lesson from June Stevenson, who is NZ’s leading Instructor.  One of the physiotherapists suggested Nordic walking would be beneficial for Rory as it involves the left and right sides of the body and brain equally.  I contacted June to discuss the potential for this to occur, and what it would cost.  She said she was aware of the financial stress our situation places families under so she made a preliminary request to the Nordic Walking Fitness Association NZ (NWFANZ) for assistance www.nordicwalking.net.nz  As a result the costs for Rory’s treatment will be met.  We were blown away.  Sean and I joined Rory on his first lesson.  We were surprised at how much was involved, and the extra physical workout provided.  It was a learning curve, our first step to realise the poles go behind not in front!  We spent about an hour in the Domain with June.  Rory was keen, and spent some one on one time learning the basic movements.  After a quick stop at RM House we went for a walk down Queen Street for dinner.  We have become friendly with a Japanese couple who own Fujisan, a restaurant near the top of Queen Street as we have eaten there a few times.  They have a son who has spina bifida, although he is an adult now.  The food is fabulous, cheap, and the service excellent.  It has become our place to celebrate continued remission. 

Yesterday (Thursday) it was an early start.  Moneypenny (Lyn) joined us for breakfast at RM House before 8am.  It was lovely to see her and catch up on her news (we are proud of you!).  She bought a Smiggle parcel for Rory (and received another growling from me .... thank you Lyn).  At 8.30am we me June and her husband Paul for another Nordic walking session in the Domain.  Paul took Sean and I while June worked with Rory.  Sean, of course, is a natural and has already sussed the swagger. I on the other hand struggle with co-ordination and have to think hard which makes it difficult to relax and get the natural movement.  I will need some practice.  We all enjoyed ourselves.  It was lightly showering for the last quarter of the lesson so we were all a little damp.  Rory was showing improvement with the arm movement (which is like the under arm throw of a cush ball) when Sean and I returned from a lap around the Domain.  We made a brief stop to feed the ducks and pigeons at the lake before we walked up to Starship.  Rory found a greenish duck egg on the ground. 

We met with Mr Law at 10.40am.  He gave me a copy of the Histology report for Rory’s tumour so I can research it on the Internet.  We also discussed with him how to protect Rory’s shunt.  Whenever he has surgery he will need an antibiotic prophalactic half an hour before any incision is made.  At 11.15am we went to Audiology and Shaz checked Rory’s hearing aids, and tested his hearing with and without the aids (he had to repeat words heard softly from a speaker).  With the hearing aids he can hear 90% clearly and without a little over 50%. 

We were on the road north a little after midday having said our goodbyes at RM House.  We stopped for lunch at Westfield Albany and Rory used his birthday money to buy a large hard covered Star Wars Book he fell in love with.  Miss Hallett found it for him in the Dargaville Primary library and we have been searching for a copy for him.  We stopped for an hour at Oteha valley to catch up with Matt, Mia and Oscar.  Mia was on the neurosurgical ward at the same time as Rory.  Their birthdays are very close and she had a brain tumour (which could not be completely removed).  Mia has grown, now has a head of hair, and is 2.  She sat ‘talking’ to me and listening to all the activity around her.  Oscar has grown and is now 7 months old.  Rory remembers him on the day he was born in Auckland Hospital (we snuck out of the chemo ward to visit him and Jo his mum).  They all look well and their lives are as busy and chaotic (if not more so) than ours!  We were relieved to reach Whakapara and happy to see Sam.  He enjoyed his stay with the Newman’s (thank you all) and had spent the day with Grannie (who beat him at ten-pin bowling!).  We had missed Sam, and I know he has been affected by our absence and the stress of Rory’s MRI.  Sam stuck to Rory all night and there was much talk about Noah, Sam’s good friend from RM House school during the months Rory was in chemo. 

The experience of the last three days catapulted us all back into the last year.  It has forced us to look cancer in the face again, and reminded us the future is a fragile thing.  It has been a huge reality check, but also a time to consolidate and gather strength to move forward.