Rory Gardiner's Webpage

17, Dec, 2009

Thursday 17th December 2009


We've done it.  Rory's made it through treatment.  Rory had his Hickman line out today, nine long months after he was diagnosed (to the day).  It hasn't sunk in.  I think we are all in shock.  I feel like someone has had the knocked the stuffing out of me.  I've been near to tears several times over the past couple of days.  I think it's all catching up. 

We stayed the night at RM House last night.  Rory was nil by mouth this morning and we took him up to clinic at 9am.  All the wards in Starship are bright and colourful with Christmas decorations, and there is a festive atmosphere.  Rory didn't need a blood test prior to surgery as his results from Monday were ok.  We met with Dr Stephen.  He gave Rory a physical exam.  If Rory's weight continues to decline he will be forced to take supplements in place of the ng tube.  We organised the follow up tests for the 26/27 January; the MRI of his brain and spine, audiology (hearing), heart echo, and kidney function.  Vincristine, one of the chemo drugs, has caused some nerve damage so Rory has no reflexes i.e. when his knee is hit with a hammer it doesn't kick out.  It is too early to tell if this is permanent.  Nerve damage may be the reasonn for the discolouration of his lower legs and feet in response to heat (in the shower).  Rory gave Dr Stephen a Christmas card, photo, and Boo monster badge. 

There is a story behind the Boo monsters.  Rory's nick name is Boo, and there are 11 people who have done astronomical amounts for us this year who we call Boo's angels; Dianne, Mandy, Nurse Steph, Nurse Nicola, Lyn (Money Penny), Trudi, Brenda, Katherine, Grannie, Nana, Dr Stephen, and Dr Law.  Rory and I found a website  showcasing Boo-monster badges made by artist Debbie Allen.  We thought they were awesome and spoke to Debbie about the possibility of ordering some for Boo's angels.  She wanted to help Rory so made the badges and donated them to us.  I took a photo of Rory with his beads of courage and we composed a message for the back of the photo.  Over the last month we have been giving them to Bo's angels.  The last was given to Lyn tonight.  Boo's angels gave us wings this year so we wouldn't fall and they will be forever in our hearts. 

Rory went into theatre at 11.45am.  Before he went in he shed some tears and said he felt afraid.  I held in my own fear and read him a couple of stories to calm him.  Sean (in yellow gown and blue hat) went in to theatre to hold Rory's hand as he went to sleep.  Rory was in theatre for 45 minutes.  He was shivering and cold when we were called into recovery and he was waking up.  His arm was sore where an iv line had been inserted, as was the right side of his chest which was bruised and bloody where the line had been.  The Hickman line came out cleanly and he has it in a bag.  Rory has some disposable stitches in his chest, and steri strips to hold the wound shut, for the next 5-7 days.  He was wheeled in bed up to the day stay room in clinic and recovered there from 1-3pm while being observed by Nurse Nicky.  He was given pamol for pain relief.  When this took effect the tears and moaning stopped.  When he felt better he ate some sushi and a cream donut.  We had a visit from the lovely Nurse Steph.  Steph (Dr Law's, Rory's Neurosurgeon, Nurse Specialist) has been with us from day one, and gave Rory his first beads of courage.  It was only fitting she give him the final three; a purple star for surgery (his 7th), an orange bead for the line out, and a purple heart for the end of treatment.  There were many different types of purple hearts to choose from in the box.  Rory found one he liked and could not be swayed by Steph or I to consider any others we showed him.  We left clinic at 3.15pm and went for a leisurely walk in the Domain where the boys fed the pigeons, ducks and geese.  We had tea out at Rory's favourite watering hole, The Cock and Bull, with Lyn (Money Penny) to celebrate (thanks Lyn for the early Santa visit). 

Yesterday morning (Thursday) I had nerves to calm so Sam and I went further on our run/ride.  I was elated when we made it back up the drive after 90 minutes on the road.  I haven't run this far since the start of the year.  I couldn't believe my body let me, and I don't even feel sore today.  We left Whangarei mid-morning and stopped in at Albany to catch up with friends Mat, Jo, Mia and baby Oscar for lunch.  It was wonderful to see them.  Mia was in the high dependency unit of the Neurosurgical ward when Rory stayed there.  She has a brain tumour and is 18 months old.  It was neat to see her hair growing back and her skin rosy.  She listened to the activity around her.  Oscar has grown and is now four months old.  I went all clucky holding him and he fell asleep in my arms.  We enjoyed a yummy lunch and there was much laughter as we exchanged stories, and information.  The boys were busy on the Wii game console playing boxing (Jo's brother works for Sony so 'toys' are the perk of the job).  We left with homemade lamingtons, fruit salad, and Santa pressies for the boys (thanks Jo). 

I felt trepidation when I first saw Starship again.  I felt the weight of what Rory had been through in there, what was to come, and what may lurk in his future.  It didn't feel good.  It was very different when we walked into RM House.  We received a warm happy welcome and in some ways it was like coming home.  They have a beautiful tree in the foyer decorated in realistic baby dolls dressed in pink and blue pjs curled up asleep.  We picked up the latest RM House newsletter and Elijah and his parents were on the front cover.  There was a picture of Rory inside with Santa at the mid-winter Christmas dinner, and one of Sam and Noah in front of a police car which visited RM House school.  We settled in to room 805 and enjoyed a family dinner cooked by the staff at ASB bank.  We got a call from Nurse Amanda saying Rory was to be nil by mouth in the morning as they hoped he would go to theatre.  Iwas nervous and excited but also wary about getting my hopes up so I slept little.