Posted 15 months ago Less than a minute to read
Joy in every day
Rory is out of the ward. The level of Methotrexate in his blood was just low enough to discharge him to RM House yesterday morning. Rory had had enough of being confined to the bed, to the room and to the pump which filled him with 355ml of fluid every hour. It is early morning and he has slept solidly all night. I am so pleased, he is exhausted. There are dark rings around his eyes and he has a nasty rash. His creatinine level is a little off so today so he will have a GFR test for kidney function. Tomorrow night we will take him back to 27b for the 3rd cycle of chemo, and then we hope to bring him home to recover. It feels like a long time since Rory and I have been home. You lose all track of time. You become hospitalised, trapped on a ride you cannot get off. You start to think of yourself as only a patient and primary caregiver. It is not living. You need to shake it off and find joy in every day; Colt discovering a new playground, a visit to NZs newly opened Lego store in Newmarket, a Movenpick icecream, pats with Bingo the therapy dog who visits children in Starship, chatting with Grannie Gardiner on the phone, seeing photos of Sam and Caitlyn at the Tarn on Mt Taranaki (yes Sam actually went tramping), and dinner at our old haunt Fuji San.
Sean and Colt returned on Saturday afternoon. It was good to see them. They brought us fresh strawberries from Piopio. Due to overcrowding on 27b Rory was moved to ward 26a on the 6th floor for the night with Sean. It is hard to believe there are so many children undergoing treatment for cancer in Aotearoa they need to outsource them to other wards in the hospital.
Rory had another session with Dr Kath. She also had a session with Sean and I. Dr Kath will be there to support all of us as we navigate the difficult months ahead.