Oh boy RTD 2009, what a wonderful group of people. Unfortunately the House & Senate were in session most of the day and into the late evening, so not many electeds seen. Oh we had appointments, with aides. And I must say Dana Richter in Rep. LoBiondo's office is an answer to prayer, but many were disappointed. These families make sacrifices to be in Washington, unlike many lobbyists they are not paid or reimbursed. Some give up vacations and other treats to come fight the battle, plead the cause, and make a HUGE difference. After all this city (D.C.) is building a bicycle shelter, repair and rental shop adjacent to Union Station, the feds are giving 3.9 mil towards it and the city spending 900 thou. But all the while behaving like they are being generous with a 5 mil a year pediatric cancer research budget.
We feel that the Good Lord was with us all the way. From the train ride down, a man talking about a film, lead a lady to talk about how her niece had cancer as a child and how she feels it is caused by food, then saying it was an unheard of cancer something with the kidney. I say Wilms, YEP. Anyhow this lady is main fundraiser for a cancer kids day camp, last year they had 80 this year 350 kids. So sad, but she wrote down the info on Cure Search. 1 for us. Then we arrived in D.C. and went for a walk. Grace wanted ice cream. What was I thinking???Let her get chocolate, the clothes are the napkin. YIKES, a woman in ice cream vendor truck comes out w/camera. She is from Washington Post and wants to put Grace's photo in paper. OK. She gets the why we are there speech. I signed consent, not sure, haven't heard back, with METRO crash think we were put in the round file. But one more heard the plea. We were on the red line earlier that afternoon, we were protected by angels. All the RTD folks were in a meeting when the crash occurred.
Grace was well behaved in Mr. LoBiondo's office. (Although a little trying getting there. She was calm and good till we got in the Rayburn bldg. Then she got wild or something. She was doing this headbanger kinda thing, flopping her hair forward over her face and shaking it all over. I asked her to stop, about 10 seconds later it starts again. She is really wilded up. So finally she disappears, I turn around Grace where are you? I want to walk behind you, hunh? ok. Then I see a couple giggling, and I turn around (MomMom is getting slow) and there she is right behind doing her headbanger thing again. Or whatever that was.) Dana heard our story, confirmed that he is all for funding and a friend of the main sponsor of the funding. At the end of our meeting she rose and passed out her business card, again shaking each person's hand. Except Grace, yikes I saw the hand go on the hip, the bottom lip come out and I was pretty sure she was getting ready to say What about me, when Dana caught on and told her I saved the best for last! Good save.
We met so many of our Wilms friend, Corey, Mikayla, Kiki Brennan, Ian, Emily Ward, Jackson, Devin, Wyatt, many, many shared smiles. Hope to see more of you there next year. Hope the folks at home send an email to their electeds, don't let them forget, link on previous journal entry to the electeds.
Praying for those families who came for those in the fight though their own child was not able to win. We need to get those good weapons, the ones that only harm the beast. No child should have to fight so hard. No child should have to later deal with the after effects of the battle. Thanking the Lord for all of our smiling survivors, for every NED report and every advance in research and treatment. Thanking HIM for those dedicated to making Reach the Day (when no child has cancer) a reality.
Saved for something,
Deb Grace's Mom Mom
