280 Beads of Courage!!
Monday, April 6, 2009 4:38 PM, CDT
We're wrapping things up on this visit. Sicily and I are just waiting for her last dose of Mesna...the medicine that helps protect the lining of her bladder from the chemo drugs. We should hopefully be home in time for a late dinner. Her hemoglobin is dropping so she may need a transfusion this Thursday when we are in the clinic for a CBC. We had the choice of getting one today, but she's still hovering above an 8, so we'll wait and hope it goes back up.
Sicily fell asleep in the reclining chair and woke up a little on the grumpy side. She has no concept of time, so telling her we may get to leave in an hour, means very little to her.
I spent some of the time she was napping stringing beads. We just started doing the "Beads of Courage" program. I had heard about it not that long ago. Our child life specialist brought us the information on it and I sat down last night and began figuring out what and how many Sicily needed to get caught up. Thanks to all my detailed (and windy) journal entries on CaringBridge, I think I came pretty close to being accurate!
The way the program works is Sicily gets a bead for every event or occurrence she goes through on her cancer journey. White beads are for chemo, black beads are for "pokes," yellow for inpatient admissions, blue for clinic visits, and so on. Some beads are bigger and more symbolic, like the square heart which is for transfer to PICU...Sicily has two. The beads are then strung together. They symbolize courage and they honor the milestones these kids achieve on their journeys. I filled three strings full with over two hundred and eighty beads, thus far. It's such a neat thing and I am so glad Sicily is able to take part in it!
Well I'd better go. She's begging for a walk and I have all our luggage packed and ready to hit the road! Please continue to prayer for all the precious kiddos...please never stop!!!