Photo by Sally Crosbie, couple of weeks ago...Monday 21 June
I've been trying to put my finger on what is at the core of how the staff relate to us as parents and patients in the Camperdown Ward. Obviously everyone here has someone in their family who has childhood cancer in some form or other. As I've said before, it's a pretty full on place to be and work, and everyone is at different stages of their treatment. So far I have met people who like us are newly diagnosed and just starting treatment, and others who are several months down the track, and others who are a long way in, now preparing for bone marrow transplants.
The other night I had a sudden feeling of sadness (yes I looked in a book and read something I didn't want to read!) and was talking with one of the nurses who was kindly helping me to get Lucy to take some medicine. As she was talking, I realised what it was that so characterised the way that the staff deal with us – honesty. I was talking with her about what we had told the girls about Lucy's illness. As the days and weeks go on, we are gradually filling in the picture with some more details, particularly for Emma. The nurse mentioned that they (the staff) have a policy of absolute honesty. They don't hide things from us, and they don't want to hide things from the kids who are old enough to understand. She said that sometimes parents don't want to tell their kids exactly going on, particularly initially, but that it is their policy to be completely straight with everyone.
I think that honesty is what permeates every interaction I have with staff, and something I appreciate. There are no glib “she'll be right” comments, no silly jokes, no brushing off of any anxieties or the reality that kids here face life threatening illnesses. There's no talk of having to be positive all the time, or pretending that things aren't hard. No question is too silly or asked too many times. And they are always happy to talk. They don't mind you crying, but also join in a laugh. There is a healthy dose of realism about it all. Sometimes I want feel like I want people to lighten up and say “she'll be right, no big deal” but acutally that wont really be helpful for anyone. Instead their honesty and serious realism helps to instill confidence and trust.
And of course all the nurses LOVE Lucy and can't get enough of her lovely smiles.
Anyway, she's still going well – no temperatures yet (although a slight slight rise this afternoon), so still just waiting! Blood levels are continuing to fall - neutrofils down to 0.2 which means basically no immunity left. It feels like we are waiting for a big storm that is coming, but we just don't know quite how bad it will be. I kind of just want to get our first temperature or infection over with so I can see how it works.
Thanks so much to the McKerlies who played with Lucy and took her for a walk this afternoon so I could have a walk on my own at Parramatta Park, which was good for everyone I think!
Better go as the little miss is getting a bit cranky and wants to go to bed.