Americarna with Uncle David 2020

A couple of weeks at home is a good length of time.  Typically Rory is unwell for the middle half of it but the rest of the time we can enjoy sleeping in our own beds and quietly going about everyday things.  It was soothing to hear the rain on the roof last night.  The plan from here on in is roughly three weeks at Starship for chemotherapy followed by a week at home.  This cycle will be repeated four times or until Rory’s system can no longer tolerate the toxic medication, whichever comes first.  There are likely to be delays between administration of the chemotherapy agents as Rory’s blood counts will take longer to recover to the level where the next agent can be given.  There is also the risk of infection and crisis when he is low. 

We have had a visit from Aliah, the Family Support Co-ordinator from the Child Cancer Foundation.  Aliah updated Rory’s Beads of Courage and gave us some petrol vouchers to help with all our trips to the hospital.  Uncle David drove out to Inglewood and joined us for the Americarna celebrations.  David is an archaeologist and leads a colourful life.  He always has fascinating stories to tell.  It is lovely to see him on his visit to Aotearoa every 2-3 years.  We were joined at Americarna by Grannie Gardiner and Uncle Matt and Auntie Vanessa.  We wandered around looking at all the beautiful cars and enjoyed fish and chips outside a corner café.  It was nice to also bump into a few warm friendly faces.  Rory had a break from mum and the house by spending a couple of hours on Thursday and Friday morning at Te Awhinatia (Learning Centre) at Inglewood High School.  On Friday afternoon we had a visit from Marina from Access Ability.  She undertook a Needs Assessment for Rory to determine if we can apply for Family Funded Care from the Ministry of Health.  Fingers crossed.