August 17, 2016


Maintenance Day 496: Square One

We spent the morning today collecting poop. I never thought I would say that. In the end, it was collected, tested and found to be negative. I was 99% sure that she had C. diff. Back to square one. Now we just wait and hope that it is the methotrexate that is the cause of the problems.

Frustration fills our day but we do manage to find other topics of conversation. We are cautiously talking about end of treatment plans. Apparently, Scarlett has been thinking about this for some time. When I asked if there was something that she would like to do to celebrate, she started a list: “I want to have a party. With lots of food and drinks. And a banner and balloons and a bouncy house and lots of friends and music and dancing…” She had quite a bit of detail! I then asked if she remembered when she didn’t have cancer. She said no. This poor child has no memory of a time when she wasn’t getting poked and prodded and felt sick and tired all the time. So we are going to find a way to celebrate when that day comes. This princess deserves nothing less!

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