Journey

Kintsugi (golden joinery) is the Japanese art of repairing broken pottery by mending the areas of breakage with lacquer dusted or mixed with powdered gold, silver or platinum.  As a philosophy it treats breakage and repair as part of the history of an object, rather than something to disguise. 

Kintsugi, the art of precious scars, is very apt because one year ago today we were told Rory had chondroblastic osteosarcoma in his left lower jaw.  Our family, especially Rory, bear the scars of the last 11 years.  Starting 27/09/2019 we spent 9.5 months trying to kill the cancer which again threatened to take him from us.  For the last 2.5 months we have been working to put our lives back together.  The Psychologist shared Kintsugi with me so I would realise none of us is broken.  We are merely changed by the experience.  We shouldn’t try to hide the cracks.  They contribute to who we are and we should show them with pride. 

Rory spent time at the Children’s Ward (2B) on Monday morning.  He had a blood test and his port flushed.  His Lymphocytes came back at 1.1 so he no longer needs the antibiotic Pentamidine to protect his lungs.  Blood was taken for serology to check Rory’s immunity to the range of diseases we are immunised against.  The results will inform a schedule for the re-immunisations he needs.  Rory also had STOSS therapy to boost his Vitamin D level which is at the bottom of the normal range.  This involved swallowing 12 capsules of Vitamin D as a single dose.  We have submitted a Treatment Injury Claim for the Cerebellar Ataxia to ACC and I have spoken with them.  Rory’s brain is suffering a treatment injury from the high dose radiotherapy he received for medulloblastoma in 2009.  Dr Stephen is helping us with the claim.  We hope it will be accepted and ACC will assist us with the cost of rehabilitation for Rory and the equipment required for ‘normal’ living.  The claim will likely take some time as the injury occurred 11 years ago. 

I had an IEP (Individual Education Plan) meeting with David, the Special Needs Co-ordinator at Inglewood High.  We had a preliminary discussion about what 2021 will look like for Rory as he is repeating Year 13 due to all the time lost this year.  One of the goals in 2021 will be to transition Rory out of school with the support of CCS Disability Action.

Rory attend four sessions at the gym with Dane.  He has started gentle leg exercises and resumed the use of the exercycle.  He spent Tuesday with Jonny and rode Peggy for the final session at RDA this term.  On Wednesday he hung out with Natasha and it turns out neither of them excels at Pool.  Rory attended Sam’s premier league football game yesterday afternoon at Karo Park with Caitlyn.  Sam and Caitlyn looked after him for the evening.  Colt went to best friend Neo’s 10^th birthday party.  I saw a window of opportunity so Sean and I slipped away into eastern Taranaki to go hunting.  Sean shot three fallow deer.  The tragic highlight was seeing two squeaking stoats tumble out of the scrub onto the track a metre in front of us.  Western brown kiwi are present in the area. 

I was very relieved to ‘see’ my mother on Wednesday afternoon.  For five days she had been lost in a sea of pain and infection.  On Wednesday she was a lot better, more vibrant, chatty and eating.  On Friday afternoon she underwent surgery to replace her hip.  The surgery went well and she is currently recovering in hospital.  She is still in a lot of pain but it will get better with time.  I have been to sit with her most days, in rotation with dad and my brother Guy.