October 28, 2010
I made it through my first day of the low iodine diet. Thanks to Beth and her yummy bread and muffins, it wasn’t too bad. Although I will say that scrambled egg whites are a little weird (no point in trying to make an omelet without cheese). I never realized how often I must take a little “taste” off the kids’ plates while I am fixing meals until today when I couldn’t.Jake had his Halloween party at school day. They wore costumes and trick-or-treated to all the classrooms and offices. He was Batman, of course, and his little best friend at school, Spencer, was the Joker. Too funny. Hilariously, he insisted on wearing his new Superman pajamas under his Batman costume so when he took it off, he was still a superhero! Imagine if Batman could really fly, instead of just gliding, and had x-ray vision in addition to that Batarang… talk about superpowers!
Last night, when I was picking up Tanner’s room before bedtime, I found a little piece of paper on her bed with “Wish List” written at the top. Tanner had written 10 things that she wished for. Most were cute things that any seven-year-old would wish for like “more Silly Bandz” and “All the Build-a-Bears I can make.” But, what broke my heart was #1 on the list… “No More Leukemia.” Further down the list, but not far behind, written in a second grader’s careful scrawl, was, “No More Medisun.” It solidified for me my suspicion that no matter how much Tanner seems immersed in school and friends and play rehearsals, leukemia is still top of mind for her. It still dominates her life.
John and I recently had a conversation about Tanner and I expressed my concern that all this fund-raising and cancer awareness stuff we are involved in could cause her identity to be wrapped up in having leukemia. John said, “It already is. How could it not be?”
And, he’s right, of course. How could a child endure the type of medical treatment she has had; be told all the time not to touch something, eat something or do something because she might get sick; and know how much longer it will go on, without it becoming an integral part of who she is? It’s become a part of who we all are, really.
And, now, ever so slowly, cancer is becoming a part of who I am. For the next two weeks, I will be reminded every time I choose something to eat, that I have cancer. I will cook and freeze food so my family will not have to cook while I am out of pocket. I will frantically try to do all the laundry and cleaning and grocery shopping I can do to leave the house in good condition before I’m not able to help anymore… again… for the third time in 3 months. No matter that it’s not a big, scary cancer like Tanner has… it’s still affecting us all. I can understand how leukemia is top of mind for Tanner.
If you remember, this summer I wrote about a film crew following us for a fund-raising video while we were at Vandy. The video is now available for viewing online at http://pediatrics.mc.vanderbilt.edu/interior.php?mid=7926. It’s a powerful testament to the blessing that the Children’s Hospital is to our community. Tanner appears at about 4:15 if you don’t want to watch the whole video (it’s about 8 minutes), although it’s worth watching. There are no words to describe how proud John and I are of her role in this video. From a child’s perspective, she tells it like it is. No adult explanations needed. Her child’s view is pretty mature, considering all she has been through.
As Tanner says, “Kids shouldn’t have to go through all this mess.”