Journey

Rory has been discharged.  His methotrexate level on Monday night was 0.1, close but not close enough.  The last 24 hours seem to be the hardest to wait. We are all sick of being indoors and for some crazy reason secretly anticipate the next level will be the one which lets Rory out.  The target dropped to 0.05 and Rory’s level at 5am was 0.09 yesterday morning.  Rory is called a slow excretor.  The only way to expel the methotrexate is with hyper hydration, IV fluids given at almost 8 ½ litres every 24 hours.  The reason the target level drops is because the doctors need to make sure Rory’s body can expel the tiny amount of residual methotrexate on its own, which for a slow excretor takes time.  Rory’s body (primarily his kidneys) need to be protected by leucovorin during this time.  Rory’s level early afternoon was 0.06.  The doctors agreed to discharge Rory but we had to ensure he drank a lot until bed time and we had to give him oral leucovorin at 8pm and 2am with a third dose due at 8am this morning.  Rory is tired, has a couple of ulcers on his lip and irritated itchy skin from the adhesive dressings but apart from this is in reasonable condition considering.  We took him out in the wheelchair for fresh air and some green in Auckland Domain before dinner.

Rory’s full blood count is good enough for him to receive chemotherapy agent doxarubicin on Friday and Saturday mornings as an outpatient, then we are coming home.  The tentative plan is to be home until the 30^th of March.  This will be finalised with Dr Stephen at a clinic appointment on Friday morning.  We are hopeful Rory will get to celebrate his 18^th birthday at home on March 27^th.