Monday, March 21, 2011

Number 201

This is Eve vs. Wilms blog post #201. That means that if you are my parents or husband, you have read 201 entries by yours truly. I promise you that at least two, at most three, of said posts involve me being showered and presentable enough to interact with government officials.
Well, at least showered.

Compared to last year, our trip to Washington was giving off much better vibes.
Once inside the Russell building, we headed up for Senator Richard Burr's office, where we met with a staff member. Our fellow North Carolinians for this meeting included a 29-year leukemia survivor, two ladies from the Jeff Gordon Foundation, Zach (a 3-year-old neuroblastoma survivor) with his mom and grandma, and the mom and aunt of a leukemia survivor.
 We all did a great job of asking for the big four: maintain funding for fiscal year 2011 and increase it for 2012, co-sponsor both the Creating Hope and Survivorship Acts, and join the Congressional Pediatric Cancer Caucus.

It wasn't until after the meeting did most of us find out that Senators can't join the caucus. Not because the Senator's office told us, but because another person in our group knew. I spent a good majority of the day spreading the word to anyone I saw in a CureSearch t-shirt: Don't ask your Senator to join the Caucus! Oh, you already asked them? And they didn't correct you, either? Apparently I should have known about caucusing from high school civics, but during our training when the leader told us to address him as “Senator” and ask him to join the caucus...well, my bad, I guess. I misunderstood the assignment.
Our next stop would be lunch. Back into the Capitol Visitor Center. Back in with the prohibited Dum Dums, which were allowed through this time. But I got to stand face-to-face with the security guard who put my dad on the list, and she made me take off my belt. The same belt that had set off every other metal detector that day. The same belt that every other security guard waved their wand over. The same belt that is literally falling apart, so I just keep it in my jeans and only remove it on laundry day. The same belt that is miraculously holding up my pants, because that's what belts do.
I know she made me do it because she didn't like my dad. I just know it.
We were provided meal vouchers for lunch, which was nice. Eve was able to get turkey on wheat, carrots, and celery sticks with her child's voucher. You know, because most kids are dieting. Matt and I had to choose from a cheeseburger and fries, chicken tenders and fries, or pepperoni pizza with our adult vouchers, otherwise known as EVERY KID'S MEAL MENU IN AMERICA.
There was more chatting with people about not asking Senators to join something they aren't allowed to join while Eve ate my chicken tenders and fries, flipping the greasy bird to the people who tried to hold her back with turkey on wheat. She can't beg for research dollars on a high-fiber, low-fat lunch! THIS IS AMERICA!
After lunch, we decided to try to sit in with someone else's meeting, but we never did make it because the street in front of the Capitol was blocked off. By officers with high-powered rifles. And mean looks on their faces. What the heck is going on?
Duh, it's St. Patrick's Day! They must be shadowing a leprechaun.
Oh. It's just the President. With the Prime Minister of Ireland. On the Capitol steps.
(I wonder why the Irish Prime Minister would want to be in the U.S. on St. Patrick's Day? Doesn't he know that I really wanted to cross the street? I bet there would be some angry Irish folks if Barack Obama showed up in Dublin on the 4th of July when they were just trying to get to the end of their rainbow.)
After the excitement wore off and we were allowed to freely move amid the nation's capital again, Matt and I decided to skip the meeting we had with Representative David Price. Rep. Price gets two thumbs up in my books (he's the first to get the "I hate cancer and love babies!" shirt), and there were several in attendance at the meeting, so we figured it would be better to attend a different meeting instead of preaching to the choir. Matt, Eve, and I joined Zach and his family at Rep. Butterfield's office.
We again met with a staff member. It was great to see someone actively listening to us, taking notes and asking questions. And it was extra-cool because we did get to ask his office to join the caucus. Because that was the part of the big beg that I was really good at, having practiced it at Sen. Burr's office.

After that successful exchange, we left for our next meeting, which wasn't for another ninety minutes. So we walked really slow. My dad was finished with his meetings, so we played phone tag for a while trying to find each other. And when I did get him on the phone, it wasn't very easy to understand where he was.
“I'm on the corner of 1st and psshhhhhhhhhhh.”
“1st and psshhhhhhhhh.”
I can't hear you, Dad, you're breaking up. Can you just text me?
“Ok, I'll email you.” Click.
And my Dad did email me. Except I don't get email on my phone, since I'm rocking the same smartdumbphone I've had since 2007. But at 9:07 p.m. that night, I did find out he was on the corner of 1st and Maryland.
(Dad, why did you email me when I said TEXT me? I don't get email on my phone! “I don't get texting on my phone.” I'm sure it made sense to you at the time, right, Dad?)
Finally at the Dirksen building, my belt and I were able to head for the elevator with our party. Zach and his family boarded along with us, and a stranger decided to share the ride. Looking at Zach, he said, “Is your name Billy Bob? I'm going to call you Billy Bob.” And that's all he said before getting off on his floor. Hey y'all, how'd he know we was from North Carolina? Did someone tell him we was gonna go see Kay Hagan? Or did the smell of all these free Bertie County peanuts we got in our pockets give us away?
I was looking forward to meeting the Senator but unfortunately she had to leave. We met with a staff member and again had a good meeting, just like the others. I did print out a letter from the Senator I received when I contacted her office about childhood cancer last year which contained the following:
Cancer is the leading cause of death by disease among U.S. children between infancy and age 15...Fortunately, the risk of developing certain forms of cancer can be reduced with screening and lifestyle and behavioral changes.
I worked very hard to find a tactful way to say that while this may be true for adult cancers, this is inapplicable to children. (I mean, the children who have already quit smoking, stopped drinking, and given up tanning beds.) The staff member was very apologetic for the mistake and promised to correct it for future letters, which I greatly appreciated. Finally! I solved something after an entire day on Capitol Hill.

At the conclusion of each meeting, we all left behind some materials. I did the lazy “Here's our story” thing by printing out this blog post which was a very long-winded summation of what Eve has been through, but honestly, how could you condense it? Stephen King wouldn't make it any shorter; how else are they going to turn it into a television mini-series? Stephen King's Downstairs Eve.
I also left an email from a friend and fellow Wilms mom as we talked about co-sponsoring the Survivorship Act. “This is an email from someone who desperately wanted to be here today to talk with you in person, but could not because she is in the hospital with her daughter. Her daughter is a cancer survivor, but is now undergoing surgery to address SERIOUS issues that have arisen as a result of the treatment.” And don't ask why I just typed some words in bold and another in all caps...that's just part of my nuanced delivery.
But I think maybe I actually said “survivor” and “treatment” in all caps and just bold-said “serious.”

1 comment:

  1. Thank you thank you, a million than you's. Can't wait to join you one day.

    I am so on fire right now I really should be conquering something head on, besides just the insanity that is our life after cancer. Just had Julia admitted to our local KidsPath service (counseling/home nursing). Really crappy when you're cancer surviving child has to be admitted to palliative care because of their treatment side effects!

    Our Onc NP summed it up when we played catch up on the phone today... she must have said a dozen times, "Didn't you read the book?! Julia's cancer wasn't supposed to be this way!!" Yuppers. I'm with ya 100% on that one.

    But cancer doesn't play by the rules which is why us cancer parents have to be nutso. We are at war with a madman named 'Cancer' and the stakes are way too high to let him win another hand. So we're pulling out all the stops.