Sunday, June 13, 2010

Hi there, here we are on day 3 of chemo, and things are going well so far. Lucy is still in great spirits and here you can see her totally loving some music therapy! She's a real gun on the drum and quite proficient at the shaker. She just loves listening to music and was quite entranced by the lovely music therapist's guitar and beautiful voice, accompanied by her sister Jasmine who does a pretty mean "Alice the Camel". Apparently Jasmine is also working on mime, which means you just move your mouth and don't sing - Lucy was not so inspired by that one!
We have been totally blown away by the amount of thought and work that has gone and continues to go into life on the oncology ward. As you can imagine, it's a pretty full on place to be and work, and there are lots of people who's job it is to make life a bit nicer for the kids and their families. "Cure our Kids" is an organisation that does lots in that way - they provide lots of snacks and stuff in the parents room, have parents afternoon teas, give care packages when you arrive, organise things like hairdressers and masssage therapists and craft mornings. All low key and no pressure events, but sincerely welcoming and supportive. We are thankful for them and their support.
In terms of entertainment, we have things like the music therapist, and Captain Starlight (who usually lives in the Starlight Express room but visits the kids in the wards too). There is also a play therapy room with lots of great toys and things to interest and amuse the kids. They have given us some lovely toys for Lucy to play with in her room as well.
We have had a good weekend, and last night Adam and I both got to stay at home together which was just lovely, thanks to my gorgeous mum who stayed the night with Lucy - thanks Mum!! I think one of the big challenges we face is getting time together as a couple, so those kind of opportunities are wonderful. As we don't know how things will look over these next few weeks, it's hard to plan time out or away - obviously if Lucy is unwell and unhappy I will want to be here, but it's important to maintain relationships with Adam and the other girls too. I am learning to accept that at every point someone will be missing out, and just to try and make the best of what we can do. In that vein Adam has just sent me a mega spreadsheet detailing our day to day movements with the other girls - I'm a bit scared to look! Adam is in super-task mode - quite helpful for me who goes into space cadet mode re tasks when stressed. Just pray we'd communicate well about what's happening so there isn't tension over who is doing what when and where!
So far I think the other girls are travelling alright. The social worker has suggested trying to do something with them individually (just reading or talking or something simple, even when we are all hanging out together). I tried to do this a bit on Saturday, and will see them again tomorrow (yay for the long weekend!) and hopefully their little love tanks have been filled up a bit..... thank God for Skype and mobile phones and all that stuff! Please keep praying for them and us as we manage and help them manage how they're feeling.
Must go, Lucy is awake! Thanks for your support, love Liz


J said...

Great to read things are going so well. You are all in our prayers.
The Princes.

David said...

Good idea this blog thing....

nomirussell said...

HI, I did work out how to get here! HOpe the rest of the arvo went OK. Lovely to see you and to see Lucy so happy. Sleep well. Nae

mckerlies said...

Lovely photo of Lucy playing the drum. Good on you Adam, so organised, great dad. Great mum too Liz to keep us all informed with your blog. God bless you all, love and prayers from The McKerlies