Journey

After three days and three nights on the ward sleep deprivation kicks in.  We have had only a few hours sleep each night.  I am usually an 8 hour a night girl and Rory sleeps a solid 10 hours.  For Rory the effects of sleep deprivation are magnified because of his disabilities, and he has been subject to chemotherapy and hyper hydration.  When he is sleep deprived Rory reverts to the behaviour of a much younger child.  He stops doing the few things he still does for himself and becomes incredibly slow.  He is constantly tired, has little appetite and gets depressed and upset.  I also slow down.  I get headaches, my head spins and I am less patient.  Rory naps during the day but I have never been a day sleeper and need to be awake to keep the show on the road.  The Methotrexate doses are a very trying five days.  Rory’s Methotrexate level was 30 on Thursday night and 0.93 last night.  The level must decline to 0.1 for him to be discharged.  I’m hoping it will reach that level by dinner time tomorrow (Sunday) so he can get three decent nights sleep at RM Grafton Mews before he will be readmitted to the ward for repeat treatment. 

Friday passed by.  The port had to be re-accessed as one of the connectors came off after a shower and they cannot risk contamination. Rory received a dose of Furosemide as he was retaining fluid.  Furosemide makes you pee every half hour for a couple of hours as your body wrings out the stored water.  Rory still has a slightly elevated level of glucose in his blood and urine.  He is getting a finger prick several times a day to monitor this as he is at risk of steroid induced diabetes.  We had a couple of visits from Nurse Tracey.  In the afternoon Nurses Felix and Malveena from Dr Nicks team came to check on Rory’s neck wound which looks like it is finally starting to heal.  We also had a visit from Christina, Lenny’s mum from Taranaki.  Lenny is a couple of years older than Rory and has been fighting osteosarcoma for a year.  Their family are still living like we are, one day at a time, one week at a time.  They also keep pushing on, never looking too far ahead at what the future might hold.  It is always nice to spend time with Christina, two mums of CKs (cancer kids) are stronger than one! 

Thank you to Gabby’s Starlit HOPE for the surprise random act of kindness which arrived at home.