"Today, I say that we are resilient, we are strong, we are determined. So let us raise our voices and make ourselves impossible to ignore, for no mere politics can stand against the power that lies in our stories and within our hearts, and we will not stop until we reach the day that our dreams becomes their reality and their hope is made manifest and childhood cancer is no more." -Sebastian Gillen, Childhood Cancer Survivor

I am back home after a wonderful, amazing, eventful, busy, exciting, scary trip. I'll start from the beginning and try to tell as much as I can.
We arrived Sunday night to our hotel. It was beautiful and right on Capitol Hill. We went to the restaurant there because we were starving and there was nowhere around to eat. It was very fancy, and we walked in and there was nobody to seat us, so we started to seat ourselves. The hostess ran up and Melanie asked if we could just seat ourselves. She laughed out loud at us, then said no, do we have a reservation? The place was empty, mind you, and we said no, we just arrived. She left and came back saying she could "squeeze us in". We looked around at all the empty tables, gave each other a "don't look at me or I'm going to bust out laughing right now" look and managed to behave ourselves. Since we were paying for our own meals, we only ate there once! That started a series of hilarious events that continued all weekend. We were two fish out of water for sure. We had so many funny things happen, I haven't laughed like that for quite a while! This was our room, there was actually a pillow MENU. Yes, 8 different choices for pillows.
We had the morning to sightsee since check-in and meetings weren't until late afternoon. We had an offer from one of our blog followers, Heather, to show us around a bit. She showed us how to use the metro, and that saved us a LOT of walk time. Heather, thanks again, we loved meeting you!
First stop was the National Archives, gotta see the good old Declaration of Independence and the Constitution! It was so awesome, except for the part where we almost got kicked out for ACCIDENTALLY flashing our camera, it fades the documents. There was a photographer there who said she could turn off my flash, but in the meantime she flashed it. Totally not my fault, but the guard rushed over in an instant and gave us a good scolding. Now I feel guilty for contributing to the documents fading more than they already were :(

All of the security guards were so nice there. They were helpful and had a great deal of information to share, we just had to take a picture with this guard. He plays in a jazz band and was so fun.
Then we went to the Museum of American History, where we saw some really cool old American stuff. We saw Julia Child's kitchen she donated. The highlight was seeing the actual flag the Francis Scott Key saw when he wrote the Star Spangled Banner. I had NO IDEA we even still had that and it was HUGE! No cameras allowed, so no picture, but it was amazing.

The Washington Monument was always my favorite as a kid. Being in DC brought back so many childhood memories that were unexpected. It's funny how you don't appreciate something until you leave, Melanie and I were like 2 kids in a candy shop, there was so much cool stuff to see.

We did a lot of walking and both had sore feet at the end of each day, but it was worth it.

The Reflective pool right outside the Lincoln memorial. Taken from the top of the steps.
We put away the camera and checked in with Curesearch around 3 and started our Team Leader training. The explained all the things were were asking congress for and that was very helpful. It is a different language, but I am slowly starting to grasp it....a little. One of the main things we are requesting is for the full funding for the Caroline Walker Pryce Conquer Childhood Cancer Act. It was passed unanimously with no votes against it in 2008 and approved for $30 mil to go to the COG (Children's Oncology Group) for research each year. HOWEVER, we still have to fight for the actual FUNDING of it now. For 2010 we were given $4 mil of the $30 we should have received. Although that was an accomplishment, it still isn't good enough. We want the full $30 mil. That was our focal point, with several other asks for them. After the New Team Leader training, they had a welcome reception. We were able to mingle with other team leaders and we met some amazing people that I think will become very good friends. Everyone there has been touched by cancer, many have lost their children and many have survivors. Whatever their reason they were all there with the same passion I have in my heart for this. Sometimes I talk to people and wonder if I sound like a cukoo to them, because I get so worked up about it. There they were all driven with the same passion, to fight until childhood cancer is behind us, until every child can be told they have a cure. So I didn't feel like such a cukoo!! Melanie was the ONLY cancer aunt there, they all made a joke that she deserved to wear a "CANCER AUNT" button. I was proud to have her there with me. We also met the new president of CureSearch and he gave us all his vision for the organization.

After the reception we went to our room and started working on our strategy. We worked on it until about 1AM and kept changing our minds. We had it all written out, and it sounded too rehearsed. We tried notes, and kept forgetting points we wanted to make. We were so nervous, I was especially nervous, I just couldn't go to bed. Finally we decided to scrap it all and just speak from our hearts with a few major points we wanted to make. We went to bed, and despite the incredibly comfy beds, neither of us slept more than a couple hours. I woke up with a knot in my stomach. We went down to breakfast and the knot came with me unfortunately. They had a 7:30 breakfast and meeting. I could barely focus I was so nervous, but I managed to eat and listen a little. They had an oncologist guest speak who tried to explain one of the research projects to us, I followed a little bit and got lost a lot. One thing he said struck a cord though. He had a graph of ALL, which is the diagnosis Brinley has. He talked about the 90% cure rate. Then he took out the percentage of kids who have certain long term/permanent side effects from the harshness of the chemo. He took them out little by little, and ended up with only 8% of the kids diagnosed with ALL who are CURED completely with NO long term side effects, in essence, cured as if they never had it. Only 8%! There is SO much to do, even with the best of success rates that some of the childhood cancers have.

Then we were shuffled off to our meetings with our congressmen. Melanie and I rushed off to Capitol Hill. Or as Melanie would say we went to say "WUT UP Capitol Hill!" Our first meeting was with a staff member with Senator Orrin Hatch. After ending up in the wrong office in the wrong building, (long but very funny story) we made it with not a minute to spare. We were told in our meetings to remember that the staff members are very influential and are also very important to bring over to our cause. She was very nice and listened to everything we said. I was so afraid I would fumble and bumble the whole time, but I had prayed so hard for help that the words just flowed out from both of us. My nervousness disappeared and I was speaking from my heart for the Utah kids with cancer. It was so easy to do! I guess you are doing what you are supposed to be doing, the Lord helps you out where you need it. And it certainly isn't hard to plead a case for kids with cancer when I see them so much. We gave her our requests and she didn't rush us out or treat us as if we weren't important. She asked questions so that she could bring our requests to the Senator.

Next stop was with Senator Bennett. After the first appointment was over, my nervousness almost completely went away. The words were coming easier than I thought they would, so I was feeling much better. We thanked him for taking the time to meet personally, and the same thing happened. We were able to tell him about what the world of cancer is like and how desperate these kids need our help. He listened, we didn't feel GREAT about it, but he did hear us out. On our way out his staff member who was in the meeting with us followed us out. She was a tall, beautiful young woman who had been extremely professional in the meeting. She showed us out when we were done, and when we were outside of the office she told me that her little brother had ALL in the 80's and didn't survive. I was so caught off guard that the tears just started coming out. I was unprepared for that, because she had been so poised in the meeting, but she immediately started to cry as well. We talked for a short minute through our tears, then she said she had to hurry off to the bathroom (to compose herself again before going back in). It was quite the moment, I wondered what she was thinking listening to us talk about what kids with cancer go through.

Then we met with Congressman Rob Bishop. We were so grateful that he also was willing to meet us personally. I know they are such busy men, it really meant a lot, and many of our fellow team leaders were surprised we were able to meet with two of the actual members. I do have to say that he was very intimidating at first, I could tell we were another meeting in his busy day. As I started, I told him that I was a mom who stayed home with her four kids. I am a professional mother, and I was very much out of my comfort zone in this professional world. I told him I was nervous, but I had promised my daughter and myself that I would not close my mouth until there is a cure offered to every child, and so here I was, meeting with him, to speak up for the kids in Utah with cancer. The more we talked, the more he softened, and by the end he was one of our favorite people. He was very honest and upfront with us, and we appreciated that. He gave us a definite yes to one of our requests to join a caucus. He said no to some other requests to co-sponsor some bills, but he explained why and that it didn't mean he would vote no on them. The rest of them he needed to review.

Our last meeting was with a staff member from Congressman Chaffetz's office. She was a young lady from Utah, and was one of the most pleasant people I have ever met. She was a very compassionate person and I could see she was touched by the things we told her. She told us that Cong. Chaffetz is very passionate about cancer organizations because his mother passed away from cancer. We had done our homework, so we already knew that :) We made our requests with her and are hopeful to get him on board with this important cause.

In a nutshell (too late for that I guess), we know this will be a long road. The door is opened in Utah now for CureSearch, and if we work our tails off, I am hoping we can make some progress and get some help from our representatives. I feel so good about how it all went. I am so excited to be able to do something in this helpless world of childhood cancer.

Melanie and I in front of the Capitol Building:

When I got home, I talked to Brinley about it and told her that I told the guys in Washington about her. She just keeps smiling and asking about it. I said I told them that she didn't like having cancer and that she wants them to help cancer to go away so kids can't get it any more. She can understand that much of what just happened!

I feel so honored to be able to do this. I still can't believe I got the opportunity to share all of this with members of congress. I told them that they each had an important part to curing childhood cancer and that we needed them too. I hope they will listen. I will keep going until they do....


Anonymous said...

Thank you for taking us with you. The pics are awesome...your voices have been heard!!Congratulations for stepping up.I am glad all families are safe and back together again..xoxoxoxox love & hugs

A Nancy

Melanie said...

Great way to sum it up! It feels so good knowing that we can make a difference. I have to add that I was soooo proud of Kristin. She did amazing in those meetings! If she didn't tell them she was nervous, they never would have known. It was the perfect combination of knowing her stuff and coming across "real". What an incredible experience. Thanks for letting me into this adventure with you. Can't wait for the next step! A walk ...?

Stacy said...

Awesome! Way to go!

Phyllis said...

Great update. So glad you were able to meet with so many people. Sounds like you did a wonderful job. And I'm glad you were able to have some fun and lots of laughs.
Phyllis (mom to Kristen & friend of Abby Riggs)

Anonymous said...

Welcome home!!!!I am happy for all that you was able to accomplish Kristin and use the freedom that you have and raise your voice on behaf of so many who suffer and you put your brick to change the history. Thank you!!Mean while your four daughters was happy and supportive like seing we need to help Momi true all these. What a great experience!Love Lidia

Lidia said...

Thanks Kristin. You are great. I know that God bless you and you will talk every word that He'll put in your mouth..."I will go and do thethings which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing wich he commandeth them"..(1 Nep.3:7)
We love you and Melanie for this great, beautiful and sacred opportunity. Grandpa David

Emily said...

I loved reading about all the details your trip! And the pictures are great, too!! Glad you and Melanie experienced so much success! Isn't it great that our congressmen allowed you to visit with them personally?!! How fantastic!! So glad you had such a wonderful time! Welcome home!!

John Hanks said...

Speechless..impressed...(a little jealous)and sooo proud.

Grandma Darlene said...

Congratulatiions Kristen. You have done a great service to the children of Utah with this disease. Don't forget you are one of The American People. The Congressmen are there to serve YOU. They are the ones who should be in awe of you and what you are trying to accomplish. I hope your efforts will be rewarded for the children who need the money for research and a cure. Love, Aunt Darlene.

Admin said...

I'm so proud of you and what you are doing, and the fact that you were out of your comfort zone makes it even more special.

You have a way with words that nearly always makes me cry. I can't imagine that the people in Washington weren't touched by your words.

Please let me know what I can do to help.