Journey

Sunday 28^th June 2020 was the start of remission for Rory from chondroblastic osteosarcoma (bone cancer) of the lower jaw.  It was preceded by 41 weeks of treatment, chemotherapy and surgery.  For one year Rory has been in the clear.  He has been NED (no evidence of disease).  He has healed well post-surgery and thanks to walking and sessions at the gym he has increased strength and stamina.  His next CT scan is 3.5 weeks away and already the anxiety is starting to build.  It never goes away.  When Rory was diagnosed with osteosarcoma he had been in remission from medulloblastoma (brain cancer) for 9.5 years.  We never expected our son to be diagnosed with cancer once, let alone twice.  It has been a hard road, and Rory has been left with significant disabilities, but I am grateful.  Last night at the parents dinner for the Taranaki branch of the Child Cancer Foundation I sat with parents who weren’t able to bring their children home.  Parents whose children were still in the middle of a battle with the hideous beast which is cancer, some for a second time.  I felt grateful and guilty.  Grateful to be home, to be at work, for the boys to be living as ‘normal’ a life as we are able to give them.  Grateful for the love and generosity of some wonderful people in our community.  Guilty that Rory has survived and we have been able to create a new normal, when others have not. 

One of the challenges which Rory faces is maintaining a healthy weight.  Rory’s weight has yoyoed over the last 12 years from very thin when he ceased to eat through to so bloated from steroids and fluids it caused permanent stretch marks.  One year post treatment and his weight is reasonably stable.  He isn’t a big eater and likes drinking cups of tea like Sean and his grandmothers.  Unfortunately due to radiation to the spine his trunk is short and any excess body fat is deposited around his middle, the worst place for it to be.  I monitor how much and what he eats, not a fun role for a teenage boy.  My weight has also yoyoed.  When Rory went through treatment for medulloblastoma in 2009 I ate little and became very thin.  During treatment for osteosarcoma I comfort ate and gained weight, made easier by the fact I was a decade older.  I have always been an energiser bunny, fuelled primarily by excess sugar.  At the end of January I decided I need to do something and I discovered Keto.  I gave up sugar and carbohydrates, lost 5kg and my energy levels are stable.  I do not miss the symptoms of sugar withdrawal, irritability, shakiness, lows and cravings.  I have discovered the joy of keto baking, even if the boys think some of my results are dubious. 

Rory visited the Ophthalmologist this week for the annual check of his eyes.  His vision is currently normal though he struggled to read some of the big letters.  We are also on the watch for cataracts.  Rory had a headache one morning which he described as a ‘ painful cold in his forehead’.  Rory rarely gets a headache so it is always worrying as it could be the sign of something sinister. 

Rory finished his second wood beer bottle carrier and gave it to SENCO David because he values the role David plays in his life.  It was a very apt gift as David is a home brewer of beer and wine. 

We caught up with our friend Peter, birder, builder and timber artist to explore the possibility of Rory becoming his padawan.  Peter would be the jedi and Rory would  learn new skills and continue with his love of timber construction. 

Congratulations Colt for winning Senior Student of the week.