Rory Gardiner's Webpage

31, Jul, 2009

Friday 31st July 2009


Rory is asleep early tonight.  It's hard to know if this is because of the chemo, or because he is recovering from surgery yesterday or the interrupted sleep last night.  It's hard sleeping on the ward, the lights stay on until late-ish and the lights of Auckland shine in through the window, plus the nurses come and go all night changing bags of fluid, taking observations and blood samples, and giving Rory drugs. 

Today was day -4 of chemo.  Chemo is measured from -5 until + 23, this gives a 28 day cycle.  Yesterday was the start of the cycle, day -5, when iv fluids are commenced.  Today was day -4 when the first drugs, Vincristine and Cisplatin are administered.  Vincristine is given via an IV push (from a syringe), and Cisplatin is infused (dripped) slowly over 6 hours using a pump.  Rory is given continuous iv fluids.  It has been hard for the three of us being cooped up in one room today.  We are used to being busy at home, going in and out, and today it was a little cabin-feverish.  We watched a bit of tv, Rory played his Nintendo, we did some maths and spelling, read some stories, built with lgeo, and played a couple of games.  Rory has nibbled at food all day but not eaten a great deal.  We have had numerous visitors, Nicola who manages the stem cell harvest and transplant, Dr Stephen to discuss treatment, the nurses, Rachel the physio, and Sue the play specialist. 

We also had a visit from the elusive Mr Law, the incredibly gifted neuro-surgeon who removed Rory's brain tumours.  Considering his ability to perform complicated, technical, and drawn out brain surgery he really is a bit of a character, think Hugh Grant meets Robin Williams.  We have been bumped off two clinic appointments with Mr Law over the last five weeks due to his other commitments, and the only reason he made it to us today was because he was strong armed by the lovely Nurse Steph.  Granted he made it last, on his way out the door at 5pm, rather than this morning as expected, but we were glad to see him.  The MRI scan taken of Rory's brain on Wednesday showed no sign of brain tumour, at either the primary or secondary sites, or anywhere else.  The sliver of tumour on the hypothalamus has gone, thanks to a combination of the surgery and radiotherapy.  Mr Law said he didn't have any concerns and the scan was the best image he had seen of Rory.  He looked at the scab which still covered the shunt wound and said it was cradle cap, the crusting newborn babies sometimes get on their scalps, and was likely held on by hair and needed to come off.  So he whipped out the alcohol wipes and promptly rubbed/popped it off, much to my horror as I was up close.  I had kept my hands off the scab for over two months fearful of infection and what might be underneath.  The wound was shallow at the top and deeper at the bottom, deeper than the top skin layer.  He cleaned it out and Nurse Steph filled it with a gel designed to stimulate healing from underneath, and it was covered with a dressing which is due to be changed every few days.  We have to keep it clean and dry and be mindful of infection, especially as Rory will have a reduced immune system. 


We also had a lovely visit from Grannie Gardiner at lunchtime as she was in Auckland today for work.  She and Grandad are looking after Sam for us this weekend.  I'm sure he will be spoilt rotten.  My friend Cindy also called in to say Hello.  She and baby Havana spent last night on Ward 25a for observation, and will likely stay tonight too.  We compared pregnancy, birth and baby stories, and discussed how strange it was two childhood girl friends from New Plymouth were in Starship with their babies at the same time.  The kowhai and puriri trees in the hospital grounds are flowering and we have been treated to the sight and sound of tui in them.  It has been a little reminder of home, and what we all value and hold in our hearts.