Tuesday, September 13, 2011

September 13, 2011: In D.C... well, not really...


After a gloriously uneventful trip across the country, I find myself back on the east coast.  I say back because I was born and raised and (almost completely) college educated between Connecticut and Northern Virginia.  Tonight, I type from a hotel in suburban Maryland, just "inside the beltway" in Bethesda.  I flew into DC/Ronald Reagan airport, which made me SO HAPPY.  That airport is practically right on top of the capitol.  You fly right past the pentagon, and can see all the monuments even from the runway as you taxi to your gate!

It was so stirring to see the Pentagon, as well as all the other monuments, particularly after watching all the tenth anniversary specials of 9/11 on Sunday.  I was filled with a new reverence.  I was genuinely inspired and moved just by their sight.  It wasn't the first time I had seen them, but it was the first time in roughly 20 years.  Ugh.  I can't believe it's been 20 years since I've been to D.C.!  I am in shock.  I think I actually stopped in D.C. on the way to moving cross country in '95, so it's not as bad as I thought... almost, though.

The other bonus to flying into Reagan is that old town Alexandria is about a 5 minute cab ride away!  This is one of those colonial gems where the sidewalks are all still red brick, the streets down near the Potomac River are super tiny, and the town homes are well over 200 years old, but all look beautiful.  It's one of those places where you can drop a million bucks on a town home, and while you have a piece of history in an amazing community, you're still in a town home!  That's okay with the folks here, though.  The charm, warmth, and history more than make up for it.  Besides, if you want a house and a yard, there are a plethora of planned communities just outside the beltway in MD and northern VA.

I went to college for 2 years 60 miles south of the capitol, and have fond memories of this area.  It was great to be back.  One of my closest friends from college JUST moved from Alexandria TWO WEEKS AGO... talk about bad timing on my part!  LOL.  He was still able to guide me around Old Town so I could find just the right little eatery for me.  The first place he sent me had a great bar and beer selection, and he warned me they had some weird menu items, and I thought I was up to the task until I read down the menu and saw...

bone marrow.


Ironic that I'm here to talk about my daughter's bone marrow transplant? no?

Needless to say, I passed on the bone marrow and the restaurant!

Virtue Feed & Grain... Home of bone marrow...

Take two... PIZZA!

Andy directed me to a place very reminiscent of PUNCH PIZZA in Minneapolis... complete with the wood fired oven!  Check out the comparison!

Punch Pizza...

Paradiso Pizzeria...


Anyway, I had a wonderful meal, hopped in a cab, and rolled up the beltway to suburbia here to my hotel, where I'll shuttle back and forth to the National Institutes of Health also in Bethesda.  Tomorrow we discuss protein and gene therapy, and Thursday morning, we discuss stem cell therapy, and that's when I speak.  Tomorrow, I show support for the two other advocates here with me.  More on them on Thursday.

In the meantime, I am a little intimidated about the whole adventure; I hope that I have a positive impact on those here.  My fear is that I will be around academics, researchers, and policy makers, and I just wonder how much experience they have on the front lines of care.  I guess that's why they bring us in - to appeal to their human side.  I imagine it is a fine line to appeal to that human side without sounding overly emotional and turn them off.  I remember what a balance that was to walk in MN.  I know that histrionics may work on the political campaign trail and in congress, but in the medical world... it is not taken well.

So, measured tones, but powerful words have been pined over, edited, revised, and rehearsed.  I hope they are the right ones.

God night.

 No, these are not Julian... it's Bella!  (But J-Man makes the EXACT same faces!)


  1. Good luck and don't be timid! Fingers crossed you will stay composed and sound "academic" too. They are people too - they just try to stay objective by keeping their faces straight, but it doesn't mean they can't be moved.

    Good luck!


  2. You have a lot of experience on talking to people by now so you will be fine.
    Good luck!
    Sweet little Bella....

  3. Wishing you all the best. I'm sure it'll go well. I hope you have the chance to enjoy the area a bit.

  4. He DOES look so much like her! Wow! Good luck, you will do great. Just put on your "going into rounds" cap- you were able to push emotion aside in the hospital with Bella, you will be just fine showing the right amount of emotion at the conference. (Hope that makes sense) Cheering you on!


  5. You will do great, you are such a great speaker and can always put your best thoughts forward. You have alot of experience and can always keep the interest of people. Best to you. Julian really does look alot like Beautiful Bella. Enjoy your trip and have some fun. Thoughts and Prayers are with you.

    All Our Love;

    Myrna & Dwight ( CA )

  6. Good Luck today- You are going to ROCK!!!!! Sending love, peace and prayers your way. Take care~

    The Davidson's

  7. Tim,

    Be yourself. You are a brilliant speaker. You are a wonderful father to three amazing children and the advocate for all of them. You and Ang nursed Bella through thick and thin, and that is a unique experience which should make the medics feel humbled in your presence. Your experience is like gold, and should be treated as such by doctors, nursing staff, research policy makers and so on.

    I shall think of you today.

    With a mighty supportive bellow from the rooftop,


  8. Have a safe and wonderful trip. The pizza looks amazing! I just wanted to take a moment and say THANK YOU for what you do. You are an advocate for the voices that no longer speak...you are courageous and a brilliant writer with such a beautiful family.

  9. Tim and Ang,

    Once again, it's a pleasure to be a part of your journey. Tim, I can't wait to hear what comes of your trip. I think Bella prepared you for just this opportunity, to present her real story to people who may only see numbers and data. She is your gift to share and I'm so grateful you have shared her with all of us. I know these "important" people will be humbled by her and her story.

    My thoughts go out to Ang as she is holding down the fort at home! I know she is a super hero, but does she ever get tired?! :) I hope she is loving her new role as mom to three!

    Blessings to all of you!

    Karen Steiner
    Denver, CO