Rory Gardiner's Webpage

17, Aug, 2009

Monday 17th August 2009


Patience is something we need large quantities of during this final phase of Rory's treatment.  We have to run with whatever occurs, spend large amounts of time indoors in a single room in Starship trying to keep Rory as happy as possible, and wait for his body to respond.  Sometimes it feels like time passes infinitely slowly, and we are hanging on by such a fine thread.

Rory continues to have restless nights.  He finds it difficult to sleep with all the lines, and the disturbance.  He has taken to having a short sleep in the afternoons.  His weight has started to increase (today it was 22.9kg) as a result of the tube feeding.  His white blood count yesterday morning was 0.45, and this morning 1.21 (yippee - it means he is no longer neutropenic)!  He will continue to have daily GCSF injections until he reaches 2.  We continue doing the same activities to fill in the time, although he and Sean enjoyed a game of fly throwing yesterday.  Rory bought a squishy rubber fly with plastic maggots in it.  It is the size of his hand and he delights in grossing us out with it.

I returned home yesterday afternoon.  It was wonderful to see Sam.  He and I were both exhausted last night and went to bed early.  I woke several times during the night a little disoriented about where I was and feeling like I needed to help Rory.  I have come across to work in Whangarei today but I am feeling very tired.  The drive over was a struggle.  I'm beginning to think Sean and I might have to further reduce the (few) hours we are working during our time 'off' from the hospital as we are both starting to get run down.  It is difficult to recover from repeated lack of sleep while we are still pushing ourselves to work.  Trying to maintain an income is a difficulty faced by a lot of the 'long-term' families at RM House, and many have ceased to work altogether.  There is also so much to do during our 'breaks' at home to keep our household running, and see to Sam and Rory's needs, as we have been absent for over a week.  We both go like the clappers from sun up until sun down (often with assistance - thanks Dianne) to get everything sorted.