September 2, 2008
Thanks for checking on us. Many of you have stopped by regularly over the last few days, I suspect hoping to hear what we will do next. This post is a non-announcement.
Erin got back from her weekend away around 7:00 Sunday evening. I'm not sure what all they did because the full range of conversation about her previous fifty hours away focused on PUPPIES. In a replay of our phone conversation from Saturday night, she mainly just moved her mouth a mile a minute talking about the seven puppies. She even tried to trick me (by getting out of the truck with a bundled up blanket) into believing that she had brought one home to keep Luke, Uma, Willie, and Teddy company.
Erin had homework to do when she got back, but the combination of digestive issues as her body starts to re-regulate itself after three months on twice-a-day prophylactic antibiotics (hors d'oeuvres for the irinotecan) and truck-riding mingled with ground sleeping put her to bed fairly early. Not to worry, she got up a half hour early to finish off the leftover work and make it to school on time (To the incredulous among you: that's right. We work and go to school on Labor Day, and I can't begin to explain why.).
I tried to talk to Erin about that scans and changing treatment plan when I tucked her in Sunday night. (To that point, we had just had a quick conversation on Friday after school when I told her the results of the scans and that we would have to try something else.) She had said she would prefer the her treatment "not cut into her free time too much," but whatever we decided was fine. I sensed she wanted to say something more, so I waited. Eventually, I asked her if she was scared. She whispered "yes." I asked her what scared her. She looked me straight in the eyes, and said she was afraid of forgetting to wear her i.d. and of going down the wrong hall and getting lost at school. She also thought she might accidentally break a rule or arrive to class tardy. I had envisioned a lot of things that might scare her, but navigating the middle-school jungle was not one of them. I reassured her about the transition to her new school and left the door open to talk about other things on her mind. We brushed lightly against a few of the biggies, but obviously school was the driver.
Erin's school day went fine on Monday (I think she stopped in for a tylenol at the nurse's office at some point). We stopped by the meat market (steak) and the bookstore (the new Eragon sequel won't be in until September 19) after school. Then we chose to float around in the lake for about an hour before I started dinner and she started homework, letting the muddy water wash away our cares and refresh our spirits. I wish she felt 100% and that we weren't facing such a long road. I jump in my skin over every complaint of tiredness, backache, stomach pain, and headache. I'll let you know when we have a map for the next section of the road.
In the meantime, consider taking a virtual walk with us. September is National Childhood Cancer Awareness Month. CureSearch, one of our favorite advocacy organizations, is holding Virtual Walk for 12,500. A ten dollar donation buys a virtual walker. CureSearch hopes to create at least one virtual walker for each of 12,500 children who will get a diagnosis like Erin's this year (frankly, I hope for much more). The money goes to research, the only thing we can't buy for Erin out of our own pocket.
If walking, even virtually, is not for you, send the ten bucks to Lunch for Life and help fund research specific to neuroblastoma. We want to keep our pallet of options growing, even as we plow through various treatment plans.