Tuesday, July 7, 2009


"Tis a gift to be simple, Tis a gift to be free....."

Amanda celebrated a week free from viral infections - what a gift! As for simplicity, she is making progress towards accepting the changes in her life. She told me that she didn't think we'd go to the parade on the fourth of July because of the crowds. She understood and was not disappointed. There is room for a lot more adjusting, but I'll take one small gift at a time. We did find a remote place to watch fireworks and managed to go "swimming" in grandma's hot tub (I'll spare Scott some dignity and not post pictures of him in a bathing suit, even though I think he looks just fine). No big parties, parades, or social gatherings. But, we are finding many ways to simplify our life and find moments of happiness. It is what is getting us through this.

Amanda is doing so much better physically and mentally. She has been feeling well enough to start up on some home schooling work, she's been going for walks around the block, and she's even tolerating Erin better. We still have rough moments every day. She has regressed a lot emotionally, and her anxiety level is still extremely high about, well, everything. But she seems happier, and that really is what matters most.

Tomorrow starts round three of five of her chemotherapy treatment. She will be off oral chemo drugs for about six weeks. This will be replaced by IV chemotherapy every ten days at clinic. One of the drugs she has had several times already, and she tolerates it well. The other drug has been used during her lumbar punctures, but typically causes mouth sores when done through the IV. We'll just have to wait and see how she does. And whatever hair she has left should be wiped out by the end of the month. Fortunately, she has only mentioned missing her hair once. Her immune system is very low right now, so we have to continue to cautiously go about our newly simplified life.

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