Journey

As time goes on it is harder to get through the six day stays in Starship required for methotrexate.  A little residual remains from all the previous treatment which has a cumulative effect.  We find it harder to do things which eight months ago we could manage.  We really are plodding on.  We continue to battle fluid retention.  Rory’s kidneys are struggling to expel the 8 litres of fluid he receives each day during hyper hydration.  Fluids retention is worse at night during which his weight balloons by up to 3 kg.  Rory is receiving furosemide twice a day to wring out the fluid but it is never quite enough.  Furosemide needs to be carefully managed as too much results in a very low level of water and electrolytes in the body, drying out the kidneys.  Lack of sleep and broken sleep is a big issue.  Even though Rory now takes half a sleeping pill and uses the uridome and bag at night there are always exciting new ways to deprive you of sleep like air in the line and kinks in the line.  Last night at 2am a nurse burst the IV fluid bag so we had a small flood and then the nurse buzzer decided to go off repeatedly on its own and had to be replaced.  I have no idea how I managed five nights on the ward, now after one I feel jaded.  All the parents on Ward 27B look the same in the morning, like they have been partying hard all night.  We pass each other in the hallway and in the kitchen like zombies.  I think about them when I am at home and have the luxury of my own bed and eight hours of uninterrupted sleep.  Ward 27B is always turning, full of children and their families fighting cancer.  Boredom seems like a minor issue but it challenges your mental health. We know what Rory has the energy for and interest in while he is an inpatient but you can only do these small handful of things repeatedly for so long.  Time ribbons out ahead of you and passes slowly. 

Dr Lucy came on Tuesday afternoon and did the biopsy.  Rory didn’t feel any pain and now has a stitch under his chin.  We are anxiously waiting for the results which could take up to a week.  There will then be discussion with Dr Nick and Dr Stephen about the next steps if any are required.  Nurse Tracey, Teacher Jan and Dr Kath have called in to see how things are going.  Rory’s methotrexate level at 48 hours was 0.88, a little higher than last visit but in a similar range to previous doses.  Another level will be taken at 2.15pm this afternoon.  Sean and I continue to swap over every 24 hours.  Yesterday was the first time in months we were able to bring Colt into Starship and spend a few minutes on the ward together.