Journey

What a difficult situation we were in yesterday.  We have talked with Rory about how he has a say regarding the cancer treatment.  It is Rory’s life.  He has to be committed to treatment for it to continue.  Yesterday at his most anxious and in a dark place he refused to carry on.  I had to go back on my word and tell Rory you are going to do this.  I felt terrible.  It is not my body which has to bear the destruction cancer and its treatment causes.  Rory is now 18.  He deserves to have some control over what is happening.  However, completing the protocol gives Rory the greatest chance of survival.  I also told Rory that if stopping was what he really wanted he had to tell Dr Stephen his decision.  When Dr Stephen visited Rory clammed up, so treatment continued.  Dr Kath spent time with Rory and I in the afternoon talking through what had occurred.  We are putting plans in place to ensure a smoother lead-in to (hopefully) the next dose of methotrexate.  This will allow Rory to talk through his feelings, in advance, in a less stressful situation.  We can then put supports in place if they are needed.  As his mother I am struggling to allow Rory to make a decision which could result in increased likelihood of his death.  How do I do that?

Following hyperhydration for six hours Rory was given methotrexate at 2.45pm.  It was finished at 6.45pm and hyperhydration continued.  He was moved to room 8 on Ward 27B.  I stayed the night with him but there was little sleep.  Even though he took half a zopiclone (sleeping pill) Rory thrashed around.  The uridome failed which required a change of bedding early this morning.  Rory has been very tired today.  He has had several naps.  Nurse Tracey and Dr Kath have been in to check on him.  There was some glucose in his urine during the night so we have stopped the dexamethasone.  His creatinine level has increased since yesterday which indicates his kidneys are working hard.  The Doctors are keeping an eye on this.  Sean swapped with me at 11am today and he is staying the night in Starship with Rory tonight.  This afternoon Colt and I went for a walk down to Cox’s Bay.  As I sat watching Colt look for crabs, enjoying being outdoors, it was yet another reminder of the continued confinement Rory endures.  It is not surprising the cumulative impact it is having on his mental health.  As Dr Kath said “because of what you have been through you all have a negative emotional balance.  There are a lot less reserves to draw on”.