December 7, 2009

It has been more than six months since Tanner has eaten in a restaurant. We have eaten outside on the patio of Jonathan’s twice, but never inside. Today, she wanted to go to Opry Mills mall and eat at the Aquarium restaurant. It has a huge fish tank in the middle and a diver often swims around and feeds the fish.

It was a great idea, because they both needed new shoes and I was so sick of bringing home shoes for them to try on and then having to take them back because they didn’t fit.

Tanner and Jake dancing on the stage at Opry Mills

So, although it felt odd to be able to say yes to something involving a public place, I gathered us up and off we went. We had the best time. It felt so amazing to be out in public with both kids… so normal… only now it doesn’t feel normal. It was pretty empty when we first got there and they were able to run around as much as they wanted. They seated us in a booth off by ourselves at the restaurant and the kids had a really good time looking at the fish. Jake especially loved it; he was fascinated, especially when the diver appeared. Poor Tanner got really hungry waiting for the food to come (did I mention it is steroid week?) and was actually crying by the time it got there. Steroid hunger is not to be underestimated. She shoveled the food in like a ravenous wolf despite the fact that it had just come out of the fryer. I asked her if it was burning her mouth and she said, “Yes,” between bites, but never slowed down.

We even had ice cream sundaes for dessert. Why not?

Despite the fact that she wasn’t feeling very good, she still wanted to get shoes and pajamas. It felt so weird to be in a store with other people. I kept having to choke down panic and remind myself to just soak it in. Even Tanner seemed a little anxious a couple of times and said once, “Is it okay that there are people around?” I assured her that we were fine, but that we needed to get out of the mall before it got too crowded.

Shark Boy and Lava Girl?

She fell asleep in the car and napped when we got home then had a lesson with her teacher, Mrs. O’Hara. After dinner, we had planned to decorate the tree together. She was very excited and kept asking when John would be home so we could get started. But, by about 10-15 minutes into decorating, the steroids got the best of her and she begged me to take her to bed. Sad for her to not have enjoyed something she usually loves so much.

Jake, on the other hand, enjoyed himself immensely. He was an ornament hanging fool. True, he usually hung about six ornaments on the same limb, but he was very enthusiastic. He sang Jingle Bells as he went and was so cute.

Overall, despite the steroids, it was a great day. I wish John had been able to be with us at the restaurant so we could all have been out together. The steroids definitely impact her and all of us, but we’re trying to power through and not let them stop us from enjoying this freedom while it lasts. We have no way of knowing whether the 100% dosing of the oral chemos she is taking is the right dose for her until we go back to clinic in a couple of weeks and see how it affects her counts. If they are down, we’ll go back to being secluded until they come back up. The doctor tells us that it usually takes 2-3 months to get the dosages adjusted to keep her counts between 1,000 and 2,000. At that point, we will gain a lot more freedom; she should be able to go back to school and rejoin life.

By tomorrow, I suspect the steroids will take most of the day from her. Jake is going to school for the first time in a month. Tanner and I will probably lay around a watch movies and do our toenails. That’s probably as much as she will feel like doing. Sounds good to me; I’m tired!

Love,
Beth