These Go to Eleven (D+11)

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." - Khalil Gibran

The past couple days have been real difficult. The mucositis that results from the conditioning therapy has continued unabated. In fact it's grown worse in some ways. Elise has spent the majority of the past 72 hours on the toilet. The mucosal cells from her mouth all the way through her GI tract are sloughing off. This causes severe pain in her mouth, throat and bottom. We thought they'd gotten a handle on the pain with meds, but it didn't last long. Yesterday she was completely miserable. I've never seen her wimper from pain before and its was heart wrenching.

She got some small amount of relief last night, and got a little sleep, but it was short lived. This afternoon she had some terrible bouts that she reported as 9.9 out of 10 level pain.

As I write this though (10:15pm) she seems to be relatively comfortable. I hope it continues through the night. She could sure use a decent night.

She had some real odd abrasion/rashes that we couldn't figure out. One popped up suddenly in the middle of the night Sunday and it was screaming painful (is that a 8 or a 9?) I couldn't figure out where they came from. They cultured them like they do everything that looks odd, but nothing popped. Finally the infectious disease Dr dropped in and said he thought they were radiation burns. I looked them up on the web and sure enough they fit the pictures and description to a T. They all seem to be nicely on the mend as fast as they popped up which is good.

During her marathon bathroom sessions she's been "harvesting" hair from her scalp. The conditioning regimin makes it fall out. Today enough was gone that we decided to shave it off. It was so patchy that she looked more pathetic with it than without it. So I got the pleasure of giving my daughter a Signourny Weaver cut (think "Aliens"). She actually looks pretty good in it. She doesn't seem to be bothered by it, but it's been something she's been expecting for almost 6 months now. My barbering job isn't the best so we'll need to even it out when she is having less pain, but it's good enough for now.

We heard some good news this evening. Her white blood cell counts are starting to rise. They are still almost zero but they've come off of zero and are trending up. That's a great sign and the med team seems to be real encouraged. There's a long road ahead, but we'll take any and all positive signs right now.

I thought the Spinal Tap reference ("These go to eleven") was appropriate since Elise was starting to run out of room on the 10 point pain scale.