Monday, June 17, 2013

DC, Day #1

I told myself no matter how late and how much I needed to do, I was going to write an entry about every day of this Washington, D.C. trip because I knew it would be something incredible. Plus it's something I've never done before. 

On Father's Day (eve) after a nice celebration with the dads in our life, mom and I hopped in the car and drive to SFO for a red eye to DC. I knew I would dearly miss the girls but I was ready to have a break from the whining of my 3 year old. And I knew as soon as I walked out the door, I would really miss their gooey little fingers and squirmy little selves that crawl all over me the better part of the day; which I did.  Mom and I got a coffee, dinner and were off on a pleasant flight. We knew taking the red eye  would be rough but it was doable. The flight was only 4.5 hours (not much sleep) an we felt like zombies when we got to DC. After finding the shuttle and driving through town with the stereo blasting rap music (it really wasn't that bad), we made it to the hotel, took a nap and made our way on the Metro to Virginia to the American Society of Clinical Oncology where the Alliance for Childhood Cancer training was being held.  We got a little lost on the metro but eventually found our way. It was fun and reminded me of our trips to Europe. Once you got the hang of it, it's easy. 

Being in the room and hearing the speakers was an incredible site to see. These are people I've connected with over the past few months and started to form relationships with, people from all over the nation who have shared similar experiences and who all have the same goal in common....eradicate childhood cancer.  I've never felt so comfortable with a group of people.  One of the speakers who has been a lobbyist on Capital Hill was a cancer mom herself.  Her son was diagnosed with embryonal rhabdomyosarcoma when he was 3.  Imagine that. He is now 8. As she told her story, the tears started to fall down her face. I did my best but I could feel the tears building up behind my eyes as well. It is such an emotional journey dealing with a sick child. Most of us have experienced it in some capacity.  For cancer parents, you come to a realization that there is so little being done to better the treatments and prevent these cancers from happening that you feel you need to do everything you can to change that. 

We got a chance to meet and talk with Dr. Adamson, head Chair of the Children's Oncology Group and who will help us designate funding for research. We also talked with members of St. Baldrick's and realized we were sitting at the same table, our "California" table as their Executive Director.  I didn't realized they were founded in our home state. St. Baldrick's is the largest funder of pediatric cancer in the private sector.  One of their biggest fundraisers is the shaving of their heads. We discussed a partnership for grant funding and will further explore that area once the research funds start coming in. 

We talked about lobbying and the best ways to be efficient. We talked about the bills and acts in place and how to ask congress to support these acts (which I will share later) so they will move them further up the ladder. There is a lot of lingo I'm not totally familiar with (maybe I didn't pay that much attention in high school history class...) but things I expect to be learning over the next few days.  Tomorrow we will be meeting with House Representatives and Members if the Senate on Capital Hill. I'm really pretty excited about this. Maybe I'm naive but ill be damned if I'm not going to try to make some changes!

Remembering why I'm here. 

Listening to Dr. Peter Adamson, Chair of COG

There are really two people who I wish we're joining us here and that is Claudia from the Team G Board and Gretchen of Cookies for Kids' Cancer. I think the world of these two ladies and I know their stories and work for childhood cancer would resonate profoundly with legislators who we will share our stories.  As I've gotten to know Claudia, I see such an amazing individual.  Having fought cancer herself and being the product of cutting edge research, treatment and medication, she IS living proof that survivorship is the end product of cancer funding.  Watching her daughter, Tianna go through antiquated treatments and not surviving has made Claudia only want to fight harder.  If you haven't yet seen the video, please click on the link:
...And you will see what I'm talking about. 

As for Gretchen, I have gotten to know her as an inspiring, classy and dynamic lady who has already done wonders in the world of pediatric cancer. I know she would walk in, tell her story with such conviction and blow them all away.  Cookies for Kids' Cancer will always have a special place in my heart since it was one of the first organizations that reached out to me (via Michelle and Cara) and knowing how the story ties in so close to home. 

Before I get knocked into the world of dreamland, I must do a little homework for tomorrow so I can be ready and prepared. 

Thank you everyone for all of your ongoing support!!  Wish us luck tomorrow!

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