Journey

Things have started to unravel.  Rory has started to unravel.  Sean and I are feeling the strain.  Rory was admitted early last Wednesday and received Methotrexate 12-14 hours earlier than he usually does.  We expected the Methotrexate to have cleared enough from his blood for Rory to be discharged last night.  The target is 0.1.  The level at 6pm was 0.1 but the Doctor on duty refused to discharge Rory.  The goal posts seem to have moved and the target is now 0.08.  No one told us or can give us a clear explanation as to why in the past Rory has been discharged at 0.11.  We had no choice but to stay another night on the ward.  The level at 6am this morning was unfortunately still 0.1 and the doctor continued to refuse to discharge Rory.  Rory has now been on hyper hydration for five days.  When Rory heard he got upset and angry.  There were tears.  He kept saying he wanted to get out and insisted on leaving.  He is overwhelmed.  He hates being admitted for chemotherapy.  I tried to calm Rory but I had to get Dr Kath in to help.  Nurse Tracey said this time is typically when teenagers start resisting treatment and think about chucking in the towel.  Sean and I are tired.  It is hard being strong and pushing Rory all the time when he is suffering and has little quality of life.  We are questioning whether we are doing the right thing for him.  Each day he is a little more run down.  We do not know whether he will recover from the deterioration we see or whether it will result in additional disabilities long term.  It really is heart breaking to have to put him through this.  Rory will have another blood test at 5pm.  The results take 1.5 hours.  We are hoping it will be low enough for him to be discharged this evening so he can get two decent nights sleep at RM Grafton Mews.  If not Rory and I will have to stay another night and he will get only one night of relief.  Rory is due back for more Methotrexate on Wednesday morning. 

Sean and Colt arrived in Auckland mid afternoon on Saturday.  Sean has spent the last two nights on the ward.  I continue to cover the bulk of the days.  Rory’s glucose level has dropped since we discontinued the steroid (Dexamethasone) but his blood pressure has increased due to all the iv fluids he has been receiving.  Everything is a delicate balance.  Rory had a cardiac echo this morning to check his heart function.  Colt returned to RM House School today and has enjoyed the small class size and the different activities on offer. 

Thank you to Lyn and Next Generation Health Club in Parnell.  They have given us an access card so our family can use the facilities while Rory is on treatment.  We were given a tour yesterday and I took Colt for an afternoon swim in their rooftop pool.