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24, Aug, 2010

Tuesday 24th August 2010


When I sat down to write this weeks blog I thought there wouldn’t be much to tell.  However, when I cast my eye over the diary I saw there has been plenty going on.  I was an avid diary writer in high school, and have picked up the pen on and off over the years.  I began to write in earnest again the day Rory was diagnosed.  The diary doesn’t so much contain my thoughts and feelings, as happenings in Rory’s life, and the Honnor-Gardiner household in general.  The information in the books (there are now eight) has proven invaluable over the past 17 months.

We have not been immune to winter ills.  Sean had a couple of days off sick with a tummy bug, and Rory has come down with his second bad cold since we arrived.  He had today off school.  The final results of his blood tests from Auckland show he has to be re-immunised against Hepatitis B and MMR (measles, mumps, rubella) as the chemo wiped out his immunity.  His Vitamin D level is below the normal range (as with some of the other medullo children).  A lowered level of Vitamin D has been linked to a decreased level of cognitive (brain) function.  Rory is now taking daily Omega 3 and Vitamin D supplements. 

Rory has had an up and down week.  He received a Principal’s award for his courageous presentation at assembly, and Middle Group Student of the Week for his commitment to his school work.  In class, the majority of the time, he is focused on completing his work to a high standard.  His behaviour is always good.  Sometimes I feel a little sad he is not more like the other Year 4 boys who have their moments.  On Friday the Deaf Advisor for the Ministry of Education (MoE) in Taranaki visited Rory’s class to observe his learning environment.  She has recommended the teacher use a microphone and sound field.  This amplifies the volume, and projects it from the rear of the class room.  The children can use it when they are presenting.  This technology will make it easier for Rory to learn.  I was heartened by the Advisor’s comment ‘there is a difference between hearing and understanding’. 

In contrast to these positive events one of Rory’s ‘friends’ has said inappropriate things about him in the playground i.e. if Rory gets a bump to the head it’s serious and he will need to go to hospital, and if the cancer returns he will die.  Apparently this same ‘friend’ broached the subject of dying with Rory in a conversation.  Sean and I were angry to hear this.  We do not know what the motivation of his ‘friend’ was but these rumours frighten other children, making it more difficult for Rory to integrate and make friends.  Plus we can only guess the impact this has on Rory.  We had a talk to Rory and Sam, and Rory’s teacher is speaking to the ‘friend’, and Rory’s class. 

There have been other highlights in our week.  I caught up with two of the girls, Mandy and Jo.  We discussed the opportunity for another group get together.  Organising this requires a tactician as Mandy is now only 6 weeks from competing at the Commonwealth Games.  We had cousins Jason, Wendy, Logan and Mikayla over for tea.  We enjoy their company, and the interaction between (almost) two year old Mikayla and Rory keeps us all amused (she follows him round, and is into everything he’s doing).  Sam’s team won their soccer match 8-0 on Saturday morning.  Sam scored two goals and set up several others.  He was awarded Player of the Day.  We were very proud of him.  He gave his speech, on hunting, at school today.  He was nervous and spoke too fast.  I know he was glad to get it over with. 

We spent an enjoyable morning outdoors at Lake Rotokare on Sunday.  The Lake Rotokare Scenic Reserve Trust (www.rotokare.org.nz) has established a mainland sanctuary around the lake, building a predator proof fence to enclose 230ha.  They have undertaken animal pest eradication within the Sanctuary (only a small number of mice remain), and employed a Ranger who will move into a house on site in the next month.  An old school building has been moved on site as an education centre, and there is a plan to re-introduce threatened species when the vegetation has had a chance to recover.  We spent the morning with other volunteers clearing drains and vegetation from the track around the lake, painting, and shovelling soil.  I heard a NZ falcon and Fernbird.  A hearty lunch was provided at the completion of the work.  I was proud to see the boys out there doing their bit for conservation.