Thursday, May 28, 2009


The food cravings are insane! She can eat a full, adult size meal every three hours. She goes into a complete rage when she doesn't get food immediately. And she's smart enough to know when I'm trying to postpone the next meal or ignore her, which makes her even more mad. I grow weary of the bedtime meal, 3 am salty snack food cravings, 6 am full course breakfast demands (bedside snacks are not good enough anymore), second breakfast, get the idea. Pickles are the latest greatest thing. She's never liked them before. I think she ate an entire jar in about three days time. Sunday night we were frantically trying to find neighbors that had a jar on hand, only to sing the praises of my food storage efforts when a jar was located in the back of the cold storage room. It gave a whole new meaning to the phrase "emergency preparedness."

All this being said, I don't really recognize my daughter anymore. Physically she looks nine months pregnant and can hardly walk. Imagine having nine months of weight gain happen in three weeks. Her poor muscles just can't keep up. This is triggering a lot of pain in her joints. We find ourselves supporting her to just walk so she doesn't fall. She's loosing the ability to even care for herself because she's too weak.

Emotionally she's grasping how cancer is not a fun thing to deal with. There's been a lot of poor me crying spells. The words "stupid cancer" are muttered many times a day. She does not act anything like her normal talkative self. There's not as much smiling or playing. My days are filled with a lot of tantrums over trivial matters. She gets mad that Erin is even in the same room as her. Amanda knows that she's not acting normally, which makes her get down a lot. I keep reminding her, and myself, that it will not stay this way forever. And as she puts it, May 2009 has just been really bad!

Tomorrow is our last treatment day of our "intensive" month. I am nervous to go into the next phase. There's a lot of anxiety that comes with anticipating the side effects of a new medication regiment. But, I am looking forward to having more of my daughter back as she will not be on this high a dose of steroids again, if all goes well. I keep telling myself that the doctor's said the first month is the hardest. We'll meet with her physician Wednesday to discuss the details of her next treatment round.

1 comment:

  1. Sienneh would like me to write, "I love you Amanda and I miss you." The other day she said, "Mom, it's just Lame without Amanda." I know that's just putting it lightly for you guys. I will be glad when you're able to see glimpses and more regular occurances of her cute personality. Hang in there and thank heavens for food storage!