Journey

Tomorrow Rory turns 21 years old.  All birthdays are special, but Rory’s birthdays have extra significance as they mark an additional year of survival after two childhood cancer diagnoses.  The years haven’t just been survival, we have made sure they have been filled with love, laughter and adventure.  They have to count because Rory’s future will always be uncertain.  On the path of life turning 21 feels like a marker point, closure of the childhood years with adulthood ribboning out ahead.  Rory’s adulthood is going to be nothing like that experienced by Sean or I or Sam.  We are going to have to help him construct it as he moves forward.  Rory has survived longer with the shadow of cancer in his life than he has without (14 years:7 years).  On Friday we will see Starship Oncologist Dr Stephen for the last time as Rory has aged out of the Paediatric cancer healthcare system.  Last night we went out for dinner to celebrate not only Rory’s birthday, but Poppa Honnor’s 85^th and Uncle Guy’s 47^th.  Grannie and Grandad Gardiner drove over from Dannevirke.  The boys are very lucky to have three generations of our family intact and we can share the love on these special occasions.  We are all incredibly proud of Rory’s courage and tenacity, grateful he remains with us and heartbroken at the damage cancer has inflicted on his life. 

On Wednesday we had a clinic appointment with Endocrinologist Dr Sharma over the phone.  This month we will start Rory on an adult maintenance dose of growth hormone.  This should increase his energy level and muscle mass, and reduce the fat around his abdomen.  It can take up to nine months to see an improvement.  There is a long list of side effects which we need to watch out for.  He will start on a low dose and build up to what his body needs.  There will need to be minor adjustments to his usual medication and regular blood tests to monitor his response.  It is also time for Rory to have a bone density scan to measure the amount of calcium in his bones, their strength and determine the risk of developing osteoporosis as a result of the treatment he has received and the medication he has been prescribed over the last decade.  He will need these 3 yearly.  Rory had a session with ACC Psychologist Daniel.  On Thursday he and Colt enjoyed a night out with the members of the Taranaki branch of Canteen.  They went to Play2Win and shared dinner at Deluxe Diner.  Colt is able to join Canteen now he is 12 and prior to the event he completed an enrolment interview with Support Worker Hollie.  Rory isn’t thrilled about having his brother join in, but Colt will benefit from hanging out with the younger members whereas Rory is with the older crowd. 

I am recovering from Covid 19.  Today is day 12.  I have no sense of taste or smell, a dry cough, sore throat, hoarse voice, fatigue, vertigo/dizziness and brain fog.  I made it to the office to work on Friday and at the end of the day I was exhausted.  There are four other people in our open plan office who have tested positive in the last couple of weeks.  I have been surprised at the level of impact Covid19 has had.  So far no one else in our household has tested positive.  Sean and the boys have given up on doing RATs daily.  On Wednesday I sent Rory to a Covid19 vaccine clinic in Inglewood to get the latest booster which protects him against the new stains circulating in our community.  Afterwards I breathed a big sigh of relief.