Rory Gardiner's Webpage

17, Feb, 2010

Wednesday 17th February 2010


People regularly ask me how Rory is.  When I tell them he is in remission they express their relief and joy.  A common comment is "now it is all over your lives can return to normal".  For us there is no returning to where we left off.  We live with cancer, and its legacy, every day.  As several other of the medullo families have commented, we have to find a new normal.  A classic example was the hiccup yesterday.  I am working on a Health Care Plan for Rory at Dargaville Primary which is a requirement of the Ministry of Education (MoE).  It outlines Rory's health condition, daily care/health needs at school, what he must not do, medication, contacts, and emergency procedures.  When it is complete it will be discussed with relevant school staff, family and the MoE.  Rory has reduced immunity as a result of chemotherapy so is at risk of contracting chicken pox and measles, and developing serious complications.  I mentioned this to the office staff at school today and they mentioned there was one child in a neighbouring classroom at home with chicken pox, and one at school with possible symptoms.  This sent me into a panic and an exchange of phone calls with Starship followed.  If Rory has direct contract with a child with chicken pox or measles for >5 minutes he will need to go to Whangarei Hospital for a course of medication to protect him.  The two boys are not friends of Rory's, so while they may have passed in the school grounds the boys are unlikely to have had prolonged contact.  Even so itt has left me nervous and on high alert. 

Rory is regularly saying he is tired.  On top of recovering from the treatment he received for cancer the heat is knocking him.  It hit 30 degrees again yesterday afternoon.  It is a long day when you add the drive on top of school (7.30am-4.30pm).  It is hard to gauge whether he is genuinely in need of a break, or at rock bottom, merely disinterested in the work put in front of him or he has given up because it is too hard and wants to discontinue.  I struggle with what to do.  I am looking forward to having a long talk with the Neuro-psychologist in a couple of weeks. 

Yesterday (Tuesday) at school the children used a lot of brain power.  They started the day with word exercises.  Rory is struggling to get through the work set in the time allocated i.e. he only gets half done. It is exacerbated by his desire to do everything perfectly.  I have been sitting along-side Rory to slow and calm him, and prompt him to ensure he stays on task.  Copying information off the board into his books is a hurdle to his learning.  It takes him a long time, he forgets what he has read, and regularly loses his place.  Miss Hallett shifted the children's desks around so there is now a spare desk beside Rory for me.  She and I have been copying information from the board onto a piece of paper to put beside him to help him.  The children wrote a story about something which surprised them, focusing on a 'hook' at the beginning to draw in the reader.  When I asked Rory about something which surprised him he said "I got cancer".  I asked him to think about a good surprise, and he wrote a story about the Jedi visiting him at Starship to present him with his Wish.

            Rrmm I heard a light saber.  A beam of light shot up then the Star Wars people came. 

They were dressed like the real characters.  Most of them had a light saber and a gun. 

The people let me hold the light.  I felt surprised to see them. 

Maths was the next lesson.  The children worked on their basic facts, subtraction is more of a challenge for them than addition, and problem solving.  After lunch the children worked on their hand writing (I struggle with flowing letters too!).  Rory spent some time on the computer while the other children had recorder practice.  When we got home Sam and I made cookies for school camp on Wednesday.

Monday proved an unsettled start to the week.  The boys slept in, and I killed a juvenile pukeko on the drive over.  I couldn't avoid it.  I hate the death of anything, particularly birds.  When I got to school there was a fantail flying in the library.  In maori mythology a fantail indoors can be a sign of death or the presence of the spirits of the dead.  My nerves were fairly rattled.  Whaea Danielle came to see me before school.  She is away all week on camp at Mangawhai with the senior classes.  She was expecting a visit from the Special Education staff from the Ministry of Education and had come to talk to me about what was involved.  As with anything I am muddling along in a bit of a vacuume!  Monday's class began with word works activities.  At morning tea I ducked out to the public library and exchanged books for the boys.  They enjoy reading and it pleases me to see them absorbed in them.  It probably goes without saying I was a bit of a book worm.  After morning tea Rory finished his name label while the class went swimming.  This followed on to maths basic facts and problem solving.  It was very hot at lunchtime and Rory said he was tired.  He tried to get me to take him home, but I said we would take it slow in the afternoon.  The children started with silent reading, set up their homework books, and had a session in the school library.  Sean helped Rory with Therapy after school while I packed Sam's bag for camp.