Posted 14 months ago Less than a minute to read
Nurse Tracey calls Methotrexate mello yello for its colour and for the effect is has on people who receive it. It turns your skin yellow, it makes you mellow and lethargic and you feel mellow and sad. These effects normally only last for a day but this time they have lingered. Rory is unhappy and he cries a lot. He cannot be left alone as he gets upset. Dr Kath has been to see him. Rory is scared. Scared of the treatment which is ahead, of what has to be done and whether he can get through it. He is sick of being on the ward and he is very tired. Nothing makes it bearable except mum. This is a heavy load for a mother to carry. He did say having Sean and Colt around is better than just mum on her own but we have to be practical. Sean needs to hold down a full-time job for us to survive financially. My work hours reduce a little more each week and will eventually level out at nothing. Every day Sean is here is a day he isn’t earning a wage. In the absence of a plan we have been taking it day by day. Next week, once we have a plan, we are going to have to reassess how we are living and how we can best get Rory and our family through this.
Sean and I have been taking turns to do nights and time during the day on the ward. Colt is following us back and forth. Unfortunately school at RM House and Starship has finished for the year. They will both miss the distraction. We had a visit from Professor Paul Hoffman, from Greenlane Hospital, who oversees the long-term management of Rory’s hormones. Rory was due for his annual clinic appointment in New Plymouth and we won’t be there. Yesterday Colt and I did odd jobs in the heart of Auckland CBD. There is a lot more of everything; more people, more concrete, more activity and a greater level of ethnic diversity. As Colt trotted along beside me I wondered what he thought of it all, “crazy” was his reply.
Thank you to the Charteris family for the cakes and spreads. Thank you to Aliah and the Child Cancer Foundation for helping us source a better wheelchair to transport Rory around. Sean went out to pick it up from Walk on Wheels yesterday. Rory’s favourite thing to do in Auckland is go for walks and explore new places in the wheelchair. Thank-you Diana for the visit and the card. It was nice to receive a dose of family love xox