Journey

Happy 21^st birthday Rory.  We love you to the moon and back.  Rory started the day with a family breakfast then spent the morning in his happy place at NP Men’s Shed, and his afternoon with Mark at WITT.  Sam and Caitlyn came over for dinner.  Rory shared his green lego brick chocolate mud cake with everyone. 

Rory has had a battery of health monitoring this week; a blood test, a bone density scan, a chest x-ray, body measurements at Occupational Therapy with Coralie, a testosterone injection and on Friday he had his final clinic appointment with Starship Oncologist Dr Stephen Laughton.  Dr Stephen came into Rory’s life 14 years and 14 days ago on the day he was diagnosed with medulloblastoma in March 2009.  Dr Stephen guided Rory and our family through the nine months of treatment in Auckland.  Then for a decade afterwards he helped us navigate the late effects, which for some reason unknown reason for Rory are greater than expected in number and severity.  Devastatingly in September 2019 Rory was again diagnosed with cancer, osteosarcoma as a result of the treatment he had received.  Thankfully Dr Stephen was still in our lives.  Again he guided us through nine months of treatment in Auckland, and he has been there for the 2 ¾ years of remission.  Unfortunately as Rory has turned 21 he now has to move fully into the adult health care system.  Saying goodbye to Dr Stephen was hard.  I felt sad, like a piece of the foundation of our lives was being removed.  I shed a few tears and was told by Rory ‘stop it mum you are embarrassing me’.  Rory gave Dr Stephen a card and a small wooden box he had made at the NP Men’s Shed.  Dr Stephen will make sure Rory’s LEAP (Late Effects Assessment Programme) summary is complete and on his medical record.  This will guide Rory’s GP Dr Morrison and Hospital Endocrinologist Dr Sharma going forward in terms of the monitoring Rory needs and additional late effects he is at elevated risk for i.e. heart disease, further secondary cancer, kidney disease and stroke. 

Yesterday Rory spent the day with Support Carer Jo.  Usually we slip away tramping but I’m still recovering from Covid19.  The symptoms remain and I feel like a hypochondriac.  I always have heaps of energy and operate with a hum.  To not do so is a source of frustration.  We made the most of the day by slipping away to Whanganui for the Arts Trail.  We were blown away by the creativity, variety and quality of the artists we visited.  We managed to get to 20 studios; painters, glass blowers, weavers, street artists, jewellers and sculptors.  We will definitely be back next year to visit those we didn’t get a chance to see.