Rory Gardiner's Webpage

09, Aug, 2009

Sunday 9th August 2009


Rory has had a big day and is asleep beside me with his Kia Kaha Rory wrist band on his arm.  He is very proud of it.  He had a restless night last night.  He is still getting leg pain, and has an allergic rash on his chest from the surgical dressing which he itches regularly, and shouldn't.  I think having Sam and I back in Auckland, and the four of us sharing a small room, was also disruptive.  He didn't manage to keep his breakfast down this morning.  We spent all morning with Ian Hunter, the Neuro-developmental Therapist from Australia.  Ian has worked for 35 years with children with brain injuries.  Some of the children were born with brain injury, some have injury as a result of an accident, and most recently he has started working with brain cancer children.  Ian works with the children and their families to create a rehabilitation programme, re-building the foundations of normal development to maximise a child potential.  The programme is completed every day, sometimes several times a day, to stimulate dormant parts of the brain into action, and maximise the action of those already working.  Rory's programme, at this point, will focus on his physical disabilities.  Initially it will consist of crawling, commando crawling, spinning on a chair (clockwise and anticlockwise), stimulating his left side with firm touch and vibration, and carrying out left handed activities.  Ian takes the children back to basics to ensure these functions can be completed correctly before moving on to the next level.  Rory's programme will be commenced slowly as the chemo is leaving him exhausted, nauseous, and easily bruised.  Rory was required to carry out some exercises for Ian this morning, including building a lego creation using his left hand.  Sam also took part.  After lunch Sam and Sean headed home, and Rory and I headed up to Starship.  Rory had a small nose bleed this morning and we noticed several small new bruises.  At the hospital he had a blood test which showed his platelets were very low so they have him a transfusion.  We got back to RM House at 7pm! 

It was wonderful to see Sam and Rory back together again.  It had been 11 days since they last saw each other.  I watched them hugging before bed last night and there was a lump in my throat, two heads down, one bald, one covered in short spiky hair.  They miss each other, and the absence makes something incomplete in their lives.  Rory wanted Sam to stay but Sean and I are trying to keep Sam at school in Dargaville, and we have made it this far.  We will be dependent on the lovely families of Sam's good friends to assist with his after school care for a couple of hours most days so Sean is able to work and try and keep some money coming in.

Friday afternoon Sean and Rory managed to squeeze in a visit to Butterfly Creek.  Rory really likes it out there, and has always enjoyed being in the company of animals.  They had to return to the hospital to have the dressing changed on his shunt wound which is healing up well.  The nurses are taking extra precautions and keeping it covered to minimise the risk of infection or tissue breakdown due to chemo.  Yesterday morning Sean and Rory went for a stroll in the Domain while they were waiting for Sam and I to arrive.  Sam and I were fueling up at Maungaturoto when a text arrived " Where are you fellas  ........... hurry up"!  On Saturday afternoon we all went out to explore Tahuna Torea Wildlife Refuge on the Tamaki estuary.  It is a reserve encompassing the Glendowie Sandspit.  When we were there it was low tide so all the shore birds were out feeding, but we enjoyed having the pukekos around close (yes they do eat broken up chippies!) and I saw a pure Grey Duck which was very striking.  Rory requested pizza for tea, and Sam wolfed down the leftovers!!