May 28, 2010
Tanner slept for 13 ½ hours last night. She woke once for zofran for nausea and once for oxycodone for generally feeling crappy, but awoke this morning feeling pretty good and stayed that way all day. All the same, we slowed it down today. Ran errands in the morning and hung around here in the afternoon, painting and making up Star Wars plays. We ventured outside for about 10 minutes before it rained on us and forced us back inside, which was A-okay. I think some rest was a good idea.
So far so good with the steroids… she usually doesn’t feel bad until about day 3, although generally we’ll see some mood swings and emotional behavior on day two, which will be tomorrow. They’ve upped her chemo again; her counts were at 1700, which is still too high, so they added one pill to her weekly five-pill dose of methotrexate. That puts her at 100% dosage for both 6MP and methotrexate, which is the goal. I don’t expect her to have boatloads of energy or feel particularly well while adjusting to the change, though. Methotrexate seems to have a greater effect on her than the 6MP; in fact, it’s what made her so sick yesterday. Hopefully, she’ll adjust and be feeling good in time for theater camp.
Tanner had strawberries today for the first time in a very long time. She rolled them in whipped cream after dinner tonight and talked about eating strawberries and whipped cream all morning long tomorrow. Sometimes it’s the small things that matter the most.
John and I sat tonight looking at old videos of Tanner and Jake when they were really little. Tanner was so articulate at such a young age that hers are really funny, because you can really understand all the nonsense she is spouting. We laughed and laughed at some of the things she did and then I saw Millie, our beloved and deceased border collie in one of the videos and teared up. Well, once I started I kept on. I sat watching a video of Tanner being hugged by Pluto in Disney world. She is not quite three in the video and has the most beautiful, long blond hair. I found myself crying with my hand over my mouth trying to hold it in. She was so happy and sweet and innocent. John looked at me, puzzled. I just said, “You hope for so much for them when they’re little like that. We just would have never dreamed she would end up with cancer.”
I think, in retrospect, what I was crying about was the innocence of our family at that time. We had so much fun on that trip and we had no reason to ever believe anything but the best would happen for us. Every parent’s worst fear is that something awful will happen to their child. But, for us at that time, and for most people, it is a distant and improbable thought. I think once the improbable becomes reality, you lose an innocence you once had as a parent. Instead, you wake every day thinking that that “awful thing” that once seemed distant, now looms omnipresent in your life. Any day could be THE day, and anything is possible.
Some days, I only think about it for a fleeting moment. Like today, when we were at Sam’s Club eating lunch and Tanner got up to go get some napkins. I watched her as she walked away from our sanitized table and saw her, ever so briefly, drag her hand across another table as she walked by. In that moment, I thought, “Oh please, don’t touch your mouth, please.” Because that germ on that table could be the one her body won’t be able to fight. She didn’t touch her face, and when she returned to our table, I gave her some hand sanitizer and the moment was gone.
Both John and I went through a time when we were mad about that loss of innocence. Mad that we could no longer just send in a donation when we got those St. Jude’s mailing labels and not think about it again until next year. I now see too many children suffering and it is on my mind much of the time. We’re no longer mad about it; we’ve accepted it. But still, it sucks all the same.
I’d give anything to go back to the way I felt at that moment in Disney, but I know I won’t. I know I’ll never look at things the same way, though I look forward to a time when I won’t have to contemplate my child’s life on a daily basis.