July 16, 2009 My friend Ashley laughed at me yesterday when I told her, “She just has a spinal tap with chemo tomorrow, so I think we should be able to play in the afternoon, no problem.” She said most people would be stressing about their kid having a spinal tap and would expect it to be an exhausting day.

It’s all in your perspective, though. When you’re on spinal tap number 5 within the past 6 weeks, it doesn’t seem like that big of a deal. We’re pros now at the whole process and Tanner is the biggest pro of all. I realized today, though, that I’ve been taking her attitude about going to clinic for granted. A little boy, about 4 or 5, cried today the whole time we were in the waiting room. His mother’s reaction told me that it wasn’t the first time and that she was used to him fussing. We heard him screaming later when we were in our exam room… I don’t know if he was getting his port accessed for an IV or whether something else painful was happening, but it made me realize what a trooper Tanner has been.

Had a good day at Clinic today. Her counts had rebounded really nicely. Her neutraphil count (big infection fighting white cells) was 2200, up from 1130 last week. It doesn’t really change what we are able to do too much, but makes us feel less anxious, at least, about her getting an infection.

Her energy level continues to astound me. She never took a nap today (aside from the “nap” she took while getting the spinal!) and we rode bikes and played on the playground in the afternoon. She even had energy for a monster tantrum after dinner (although, in retrospect, maybe all the activity today caused the tantrum… hmmm).

She has had quite a temper for the past week or so. The steroids are out of her system, so I can’t blame it on that, but wonder sometimes how angry I would be if this were happening to me. I wonder if I might be snapping at those around me, even though it wasn’t their fault… and I’m a grown-up (at least, most of the time). Even with Tanner’s considerable verbal skills, a six-year-old doesn’t have the maturity to express that anger appropriately. (Which is easy to say now that no one is screaming “No!” at me.)

I know that finding out there is yet another thing she is not allowed to do or another event she is missing is really frustrating to her. She will tell me how it makes her feel every once in a while and it breaks my heart. At the end of her birthday party, some of the other kids were talking about going to the mall playground to keep the party going. Tanner got all excited and started talking about going there and then to chik-fil-a afterwards. I reminded her that we can’t play on the mall playground, but promised her that we would pick up chik-fil-a and take it home. She burst into tears; I think she had felt so normal at her birthday party that she had forgotten she had limitations. I hated to be the one to remind her.

Then, two nights ago, we had a really special treat… Matthew West, his wife Emily and their two daughters, Lulu and Delaney, brought us dinner at the house. Tanner and I had just watched one of Matthew’s videos on demand the day before and here he was in our house. They were such nice people and we had a great time, just talking and sharing our kids. Tanner took Lulu, who is 3, right under her wing and led her all around the house. After a while, Matthew brought out his guitar and sang a few songs for us. What an amazing voice and his songs have such a great message. He was telling Tanner, who was listening raptly, that one of his songs was written about how God helps when things are hard and said to Tanner that she has to be brave and strong and has been through lots of difficult things. Tanner piped up and said, “There are a lot of things I’m not allowed to do now and it’s hard.” Then, she mustered up a half-smile and said, “But, it’s okay, though.” Clearly, it’s not.

Tanner & Lulu watching Matthew West sing

We ended the visit with a prayer between the two families, with everyone holding hands. It was really special and we felt like we made new friends. We didn’t know them before that night; they are friends of a friend and just got interested in our family and wanted to help. Just another example of how blessed we are by people’s kindness.

Okay, so this post is long enough. Making up for no post last night. My friend Beth spent the night and we watched a movie, drank wine, giggled and stayed up too late, so no post, but great therapy.

Love,
Beth