Thursday, November 15, 2007

What Free Time?

November 15, 2007

Oh, the hubris of middle age. When I spotted some free time on the horizon, I should have said nothing, not even a whisper. Certainly, I shouldn't have made an announcement to what passes as the world at our house.

Not counting switching out of and into pajamas, how many costume changes do you make every day? Maybe one if you work out? Today Erin requires three. I didn't figure this out until I woke up this morning.

The fifth graders from Erin's school had a mini-field trip planned for today. They got to see a Ben Franklin impersonator (Is this like an Elvis impersonator only better? Worse?) over at the George Bush Presidential Library. Erin and her buddy Jackson Ross, also had the honor of introducing this event. We knew this ahead of time and had chosen an outfit (skirt, top, vest) that was a cut above the usual school attire so she would be presentable as well as presenting. Thus, my surprise when Erin arrived at the breakfast wearing shorts and a sweatshirt.

It seems that Erin's P.E. class was having some sort of skills test in the hour or so before she left. Obviously, she couldn't perform at her best without the right apparel.

So, what's the big deal? She dresses sloppy, sweats a bit, switches into classier raiment, and calls it good. Except, that's not her only scheduled costume change. At 3:00 this afternoon, Erin and some of her teammates will don their Mystic '97 uniforms (complete with candy cane socks) and serve as balls girls for the University of Texas/Brigham Young soccer match, which kicks off the NCAA tournament. After that game, we'll grab a box lunch and some tickets and head to the stands for the A&M/SFA match.

Hopefully, all of this action today will put Erin into the mood to hang out at the hospital tomorrow. Her IVIG infusion is schedule to start at 9:00 (thanks to both Jesse Parr, our local doc, and Heidi Russell our onc doc for getting this set up here rather than in Houston). If all goes according to plan, we'll be done by mid afternoon and her juiced up immunoglobulin G will get to work straightaway.

I don't expect this to be any more than tedium. Supposedly, if they infuse slowly enough she won't develop a headache or hypertension during the process. I want her in tip top shape for UIL tomorrow. She and Jackson are representing Branch in the district tournament in Number Sense.

So, you can see my alleged free time went poof and vanished. Too much free time is no longer a problem and my estimated completion time for the Proust monstrosity has already been revised to reflect that new reality. Patrick Lacey, Will's Dad, commented on Tuesday's entry that
The Master and Margarita by Mikhail Bulgakov would also make you beg for less free time. Which leads to my next question: what have you read that made you beg for less free time?

On the advocacy side, I have great news (great being a relative term that implies a pinch of progress toward the passage of the Conquer Childhood Cancer Act, where up to now there had been no visible progress). The Senate Committee considering the bill discussed it yesterday and passed it on to the full Senate for later consideration. I copy from the CureSearch web site:

The Conquer Childhood Cancer Act was considered in the HELP [Health, Education, Labor, and Pensions] committee and was passed unanimously, without amendment, and after minimal discussion or debate. This brings us closer then ever to passage of this legislation.

During the mark-up, Senator Jack Reed of Rhode Island, one of the bill's sponsors, emphasized to his colleagues on the Committee that parents and advocates have a right to have a voice in how their tax dollars are spent. The childhood cancer community has a powerful and passionate voice and has used it well. Over the past several months thousands of letters have been sent by childhood cancer advocates to their Members of Congress and information about the Conquer Childhood Cancer Act has appeared on hundreds of parent web pages, list servs and blogs. We are grateful for your impassioned, relentless support!

There is still much work to be done and many challenges lie ahead. The bill now needs to either pass by unanimous consent by the full Senate (which is unlikely) or to be voted on by the full Senate. If the latter happens, we will need 60 yes votes in order for the bill to pass the Senate.

Please continue to reach out to those Senators who are not yet co-sponsors to secure their support.

On that last thought, if you still have a Senator(s) not signed on this bill (as I do) the time is ripe to up the pressure. My staff-approved canned response for Senator Kay Bailey Hutchison included the line: "Should S. 911 come for consideration before the full Senate, you may be certain that I will keep your views in mind." I will now let her know my views AGAIN, so that she can keep them in mind.

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