For the most part, things are going OK with Meredith. We are struggling with two main things. First, up until recently she really did not want to go to school at all. We worked through this mostly by me sitting in the back of the Kindergarten class. It has been an interesting experience for me. I cannot believe how much kids learn in Kindergarten. I am thoroughly impressed. This week she went for 2 days and I picked her up before lunch. She had a great time. When I got there yesterday, she said: I don't want to leave yet. That is music to my ears.
Secondly, we are struggling with her port access, shots and blood tests. I don't blame her, who wants to be hurt like that? In the beginning, everyone told me that this would get easier. I was doubtful but believed them mostly because I was so naive. Well, I can say for Meredith it has gotten harder, not easier. There are so many things that did get easier as time went on, like the anesthesia for the radiation and I am so thankful for that, but port accesses have not gotten easier.
Last Monday was a long day of chemo. Those days are a litte easier because the access is further away than the deaccess (taking the butterfly out). On a short day, the whole thing is so traumatic that there is no calm time. I have seen signs on the walls about a program called Beads of Courage, but I didn't know what it was. It was good because it gave us a new project to work on, other than all our crafts we brought. The idea behind Beads of Courage is to give a bead for each thing that the kiddo has to do. So, for instance, any "pokes" (port access, blood tests, shots) earn a black bead (we have had almost too many to count). A hospital stay is yellow (we have had 3), a blood transfusion is red (2 for us) and radiation is a glow-in-the-dark bead (28 for us). I like that they have a sense of humor. X-rays, CT scans, Spinal Taps all have their own colors. While we certainly have a lot of colors, thankfully there are colors we have not seen and hope to not see. As you can see from the photo, we have A LOT of beads. It is hard for so many reasons, but mainly for me is the fact that we are not even halfway and already we are on our second strand of beads. I hope this reminds her of just how incredibly brave she is. I am constantly impressed with her endurance and her bravery. I imagine this wil be something she will have forever and remind her of what she has been through.
We have two weeks off from chemo so her next big day is October 24. Her reactions have been getting worse but maybe it will be a little easier because we have had a couple of breaks. Fingers crossed. Thank you for all the cards, emails, check in calls and love. It means so much to us.
