Journey

Cancer remains the No. 1 disease-related cause of death in children.  Survivors can face debilitating treatment-related side-effects, secondary cancer and early death.  Rory as he grows up, like many childhood cancer survivors, endures late effects while putting in a mammoth effort to live in an adult world.  It is an exhausting existence.  On Tuesday Rory had his 6-month post-treatment CT scan.  I have lost count of the number of times he has been in a scanner.  As I waited for the scan results I turned in on myself, preparing myself for the possibility of a bad outcome.  Flip a coin.  Heads, Rory is NED and we get another three months of ‘normal’ life.  Tails and we return to Starship to fight on.  When Nurse Tracey text on Friday that everything was fine with the result I let out a huge sob and the breath I didn’t realise I was holding.  While I am incredibly relieved and grateful for each clear scan it is tempered by the fact Rory is on borrowed time.  Cancer may not show in this scan but it might in the next, or the one after that.  If not cancer then it will be something else.  I spoke to a mother this morning.  Her 24 year old son, who is also a medulloblastoma survivor, was recently diagnosed with radiation dementia.  He collapsed on Friday and has lost the ability to walk and can barely speak. It is horrifying.  It is a hard way to live, for Rory and our family and for other survivors and their families.  Sometimes I feel angry because our son has been robbed of so much in his short life.  Sometimes I feel burdened by the load I must carry.  Sometimes I feel tired of fighting.  But when there are no choices you fight on.  You do whatever has to be done, no matter how hard, how complicated or how tiring.  Rory deserves to live and for his life to be full and vivid. 

The highlights of our week were the trips to the beach.  Last weekend we met Sam and Caitlyn, and her siblings Corey, Jayde and Kendall at Ngamotu Beach.  Jayde brought his jet ski and sea biscuits.  The boys all went for a ride and loved it.  It was fast, exciting, bumpy and scary all at the same time.  They cooled off with a swim and a Mr Whippy.  Yesterday on a scorching day we walked the coastline from Mokau to Awakino.  It seemed like everyone was out swimming, fishing, driving and walking.  Foam was whipped up along the wet sand.  Rory managed almost an hour’s walk each way holding onto my arm.  Sean has been taking Rory and Colt swimming in one of the nearby streams which runs off Taranaki mounga.  On Wednesday Sean got bitten on the toe for being a little too friendly with an eel.  Grannie Gardiner was over for the week from Dannevirke.  Yesterday we went on a road trip with Grannie and Nana Honnor to Hollard Gardens, the Kapuni lolly dairy and Yarrows Bakery in Manaia.  I made sure to pick up Sam’s order of frozen cookie dough.  A couple of the foundation blocks for 2021 have been put in place.  Sean and I returned to work. Rory returned to the gym and spent his first day with Natasha for the year.