Miss Hallett and Rory Jan 2020

When you are on a journey like ours your whole world narrows.  Parts of your life, parts of who you are fall away until you are reduced to a single focus.  Nothing outside matters and in time you no longer feel its loss or see it.  During the most challenging and painful times you turn inward.  Our network reduces to the three of us revolving around Rory.  Doctors and nurses come and go providing life support but you are not conscious of anyone else.  I write about Rory’s journey but it is like I am writing to myself.  The journey is overwhelming.  Putting it on paper helps me to make sense of everything.  I also know Rory’s diagnosis with cancer again has created a ripple in our little pond.  There are loving, caring, generous people who have been impacted by Rory’s story and who provide essential support to Rory and our family as we try to keep moving forward.  So I write to let you know how he is doing and I make an effort to interact. 

Over the past couple of days we were treated to two sets of surprise visitors.  On Thursday night we were visited by cousins Jason, Wendy and Mikayla.  Jason is a Nurse on the Children’s Ward at Taranaki Base Hospital.  He was in Auckland teaching and the family called in to visit Rory on the Ward and Colt and I at RM House.  I often contact Jase for advice after I have used Dr Google!  On Friday morning Miss Hallett, Rory’s vivacious teacher when he was a Year 3 at Dargaville Primary, breezed into his ward room.  Wendy took Rory under her wing when he returned to school after treatment and they have a special bond.  Wendy is currently studying to become a specialist teacher for children with special needs.  Rory was the subject for her latest assignment for which she got an A+.  It was lovely to see everyone and catch up on the news.  We also had a visit from Rayleen the Auckland Family Support worker for CCF.  Rayleen updated Rory’s Beads of Courage.  For his current diagnosis Rory is now onto his 3rd string and there are around 100 beads on a string.

Rory’s wounds are healing.  The wound by his ear has opened a little (it was very tight) so is being held closed by steri-strips.  It drips a clear orange fluid, as does one spot under his neck.  They have dressings and we hope they will heal and close on their own.  His leg wound is healing well.  There is a cut from ankle to knee.  Rory has progressed from the high frame to a lower walker.  He can take short walks with support.  He is very weak and tires easily.  It is awkward walking with the moon boot on.  The Physio comes every day to encourage him to do more.  Rory is still only allowed fluids and is drinking an increased number of Fortisip drinks each day.  He is receiving a liquid feed via the NG tube overnight.  Today is Day 10 after surgery and Rory ditched the green hospital gown to put clothes on again.  Another small steps to feeling more human. 

Thank you the Ryans and Mrs Molloy for the cards and your kind words and CCF for the petrol vouchers.