Wednesday, June 10, 2009


As you can see, Amanda is wearing a lot less hair. She does not like the word "bald" and was reluctant to let me cut it. But the misplaced mullet, comb-over, thinned out look was just not becoming to her pretty face. So we discussed all the various animals that shed, molt, etc....and eventually grow it all back. She decided that she liked the idea of a lamb being sheared and she even baaaaed as I was cutting her hair. So, she is NOT bald, she is SHEARED and relates herself to a little lamb right now. She didn't even bother to look in the mirror when I was done. It's usually just the anticipated change that bothers her most. She seems very content with her new look.

Today started round 2 of 5 out of our treatment phases. This one will last a month. She had a very good clinic day. I love that the staff listen so intently to how she is doing. I don't always know what to expect from her treatment or know what to bring to the doctors attention. I started complaining that I dread lumbar puncture days because she does so poorly afterwards with headaches, fatigue, and mood changes for a few days. I also told them she has a small brain cyst; I think that took the guess work out of trying something more cautious. I thought they already knew about it - oops. They recommended we use a different needle and be highly cautious of the ratio of fluid taken out and medicine put in. The new needle was used today and made a HUGE difference. She came home and played the WII. She usually curls up in a ball on the ride home and needs a few doses of pain medicine. I'm sooooo glad I mentioned it.

This month starts a daily dose of oral chemo which we'll start tonight and cross our fingers she does well. She has really started to bounce back lately. She's laughing more, acting more like herself, and even tolerating Erin to the point of teasing. She's also much stronger. Her butt muscle exercises are doing the trick.

Our only setback is that her hip x-ray showed some density depletion and spots where her bone marrow has stopped working. This is due to the steroids. We anticipate that they will go away now that she is off the heavy steroids. But, if it doesn't, we'll have to look at altering her treatment plan as these are not good permanent side effects.

1 comment:

  1. Hi Mar,
    I was reading the blog to Sienneh and she said, "Hey, being a lamb is a good idea." I'm always amazed at the innocent perspective of little children. Most of us would be grieving the loss of our hair. I applaud your strategy of relating her hair loss to that of an animal (a bit of genius thinking!) After Dayan's appointment we were walking to the cafeteria and I was thinking about you and wondering if you and Amanda would make it to the crazy cafeteria today. I had to convince Dayan to wait it out when he saw how long the line was.
    Hang in there and I'm glad today was a better day! Love ya.