July 12, 2009 I stressed all last week about whether to change Tanner’s birthday party date. I had originally scheduled it for the 6th, but thinking we were going to have a break in chemo, moved it to the 13th so she would feel her best. Then, we figured out there really was no break, except a week without vincristine, and couldn’t decide what to do. When she felt so good last week, I kept thinking I should change it, assuming the new chemo treatments would knock her back and she would feel bad at her own birthday party.
Well, her party is tomorrow and she couldn’t feel better!!! The two doses of chemo she received last Thursday and the chemo pill she has been taking daily has yet to affect her, and if anything, I think her energy level has steadily increased all weekend. She has gone from napping two and three hours every day to not napping at all.
Her legs also grow stronger every day. We went to the playground today and she climbed a rock wall! Really. She still can’t run and has difficulty climbing stairs or getting herself up off the floor, but I do think these are just loss of muscle issues leftover from the steroids and from a month spent lying down. She definitely needs some physical therapy, but it’s amazing how much her willingness to play has made a difference.
It’s possible this oral daily chemo she is on may prove me wrong and have a cumulative effect on her which eventually drags her down, but with no more vincristine this month, I hope that she will continue to feel good.
Having said that, her counts were pretty borderline last week, so we’re feeling extra cautious about germs. It’s frustrating for her to feel so good, but still be so limited as to where we can go and what we can do.
Today, I felt like we had to say “no” to her over so many things. “No, you can’t come into the restaurant with Mommy; I’ll pick up the food and we’ll eat at home.” “No, we can’t play in the creek, there are germs in there that could make you sick.” “No, you can’t eat those grapes; you can only eat fruit we can peel.” “Don’t pick up that worm… it’s not good for you.” No. No. No. No. NO!
Ick! It’s not like you don’t say no enough as a parent. To have to say no to so many things is hard. Every time I do, I feel as if I am reminding her she is different… sick.
This morning as she struggled to get up the step from the patio to the back door, she turned and said, “Mom, why are some things that are so easy for some people so hard for me?” I explained about the chemo, but even as I said it seemed like a raw deal to me. She said, “We shouldn’t take something that is so bad for me.” It seems the irony of chemo isn’t lost on even a six-year-old.
But, tomorrow she should be able to do everything everyone else can. In fact, I would say she qualifies as a world champ at Build-a-bearing, cancer or not. There won’t be any stairs, any need to run or do any of the other things that set her apart from other kids. Just some of her best friends, some cute bears, a fairy cake and presents. She can handle that, no problem.
Love,
Beth
I so hope she has a wonderful time at her party!
HAVE A GREAT Build-a-Bear!! I’LL BE THINKING ABOUT YOU!