Journey

Day 5 in Starship.  Rory’s methotrexate level was 0.46 at 24 hours (Saturday evening).  This was lower than at 24 hours previously.  Shockingly it then doubled to 0.90 at 48 hours (Sunday night).  This can happen as the body stores methotrexate when it stores water, or it could be the reading on Saturday was incorrect.  The level at 72 hours (Monday night) was 0.19.  The target at 72 hours is 0.10 so Rory has missed this.  The target now reduces to 0.08.  The Methotrexate level this morning was 0.15.  They will take another level at 5pm tonight but I don’t think it will decrease enough to reach 0.08.  The target will then decrease again to 0.05.  Levels will be taken at 5am and 5pm tomorrow.  We are trying cups of tea, lactulose and walks on the ward three times a day to try and speed up the rate of loss.  Rory is known on the ward for his walks and waves at the other children in their rooms as he goes by.  I thought we had it tough until I spoke to another mother whose son is receiving treatment for leukaemia.  They have been 23 days inpatient and during the last chemotherapy cycle reached 36 days.  It really is treading water and hoping the outcome will make it all worth it. 

Rory’s blood pressure has been elevated because of all the excess fluid he is retaining.  Thankfully his blood pressure comes down after he is given furosemide.  He then pees every 20 minutes for two hours (2-3 litres).  We have reduced the amount of medication he is taking to only what is necessary.  Last night one of the medical team made an error and he missed two doses of leucovorin.  This is the medication used to decrease the toxic effects of methotrexate.  Unfortunately, as a result, Rory is now at increased risk of developing mouth and digestive system ulcers.  We are having mixed success with the uridome but the sleeping tablet does help Rory get a more settled nights sleep.  The nurses have been in this morning to change Rory’s IV line as it only lasts four days.  We have been getting regular visitors; the doctors on their daily rounds, Nurse Tracey with supplies and to check how things are going, Dr Kath for a chat and Teacher Jan.  Jan and Rory are currently working on a story about catching eels with Sean and Grandad Gardiner.

Sean and I have been taking turns on the ward with Rory.  We are like ships in the night.  On Sean’s day out he took Colt on the ferry to Devonport and they went swimming at Cheltenham beach.  Colt is enjoying the novelty of sea grass (Zostera capricorni) and sand dollars (Fellaster zelandiae) under his feet.  Yesterday I took Colt for a long loop walk to visit the op shops within stones throw of the hospital.  He found some new books to read and we refuelled at Newmarket for lunch. 

Thank you Lyn for the EB Games voucher.  It will be put to good use to help pass time on the ward.