Monday, November 22, 2010

Town Crier

I guess our trip was so exciting that it's taken me a whole week to process it all and document it here. I'm going to go with the abridged version here. In fact, I don't think I could even do an unabridged version because the first half of the symposium was like a 747; now that I was on the ground, it was way over my head.

Anyway, we arrived.

We hop onto a Super Shuttle and I notice a woman who I just felt like was going to the same Wilms Tumor Symposium Matt and I were headed to. Maybe us cancer moms have some weird cancer mom radar, I dunno. I leaned over, saw the mom in question was wearing a cancer shirt, and felt confident in my decision to ask her if she was heading to the symposium. Turns out, I have been following her daughter's story. Turns out, it's hard not to tear-up when you meet other people.

I will not complain about our 40-60 minute "trek" out to Duke ever again. Not when this mom has to drive six hours one way for her daughter to get chemo, then drives back the same day so she can be with her other seven children. She must have stowed her halo in her carry-on bag.

I know a lot of people will say, "I could never do that!" But seriously, are there other options? I think you just gotta put on your big girl panties and go save your kid's life. You don't think you could do it? You could do it. If you had to.

I hope you never have to.

Also riding on the shuttle was Dr. Jeff Dome, world renowned Wilms expert, a.k.a. everyone's doctor. He's the guy you want as your first, second, and third opinion. He's the guy your kid's oncologist is waiting to hear back from before they make another move. He's the guy who makes a good case that there is no apostrophe in Wilms. You know, important stuff like that.

We get out of the shuttle and enter into just about the coolest hotel ever. This certainly beats the Apex Holiday Inn Express.

Marriott dude: Where are you traveling from today?
Me: Raleigh.
Marriott dude: Raleigh?
Me: Yeah.
Marriott dude: [blank stare, silence]
Me: Raleigh...North Carolina?
Marriott Dude: Oh, that's like really far away, right?

We are given a welcome goody-bag from Pablove and head up to our room. Or, try to head up. The elevator doesn't want to accept the number we are pushing and instead keeps trying to tell us something in a low-whisper that, try as we might, we just can't make out. Why is this elevator talking to us and not taking us to our floor? Why is she being so secretive? This lift is obviously broken.

It's not until two minutes later when Dr. Dome enters the elevator and reads the directions ("Insert room key here") that the elevator is miraculously fixed.

We enter the room and Matt has a case of the I-miss-Eve's. I'm sure I got a pic of the girl somewhere on me for you, buddy. Oh look, here's one in the Pablove pamphlet!

Yep, that's our little girl with the mask on holding all those test-tubes waiting to be filled with blood. I miss her, too, but I don't miss this her. I miss the her with the hair. I miss chemo like I miss BJ and the Bear.
That evening, we went to a cocktail party with the other symposium attendees. The strangest thing about meeting all these people in real life that I have been in touch with via email or phone is that I didn't feel as if I was meeting them in real life for the first time; it felt like we were at a reunion. A very strange reunion for a very strange family that no one wants to be a part of...but it turns out we're all so awesome that we might just print up t-shirts and bring the potato salad for the reunion next year.
I'll tell you what the best part of the night was: boxed water. You Californians are wacky, man. I just drink that stuff straight from the tap! Hey, I happen to like my water with essence of chlorine.
So, going to bed at 11:30 p.m. after getting up at 2:00 a.m. turns out to be okay when you're body is so completely confused as to which time zone it is in. I've never woken up at 5 in the morning thinking, I could really start my day right about now! That boxed water must have crack in it.
We got to the symposium on Saturday morning and so it begins. The first speaker is Dr. Dome, who talks about genetic mutations and the like. I trick myself into believing I am following all of what's going on, only to discover I cannot repeat more than 20% back to anyone. Then again, I was a humanities major. I swear I took a class freshman year that might have been called "Math without numbers."
The next speaker was Dr. LaQuaglia from Sloan-Kettering. He is known as a surgical deity 'round these parts of cancer world. Again, lots of stuff I might have understood had I gone to medical school. But the most fascinating part of his talk was when he stopped talking and turned on a video with no introduction and no narration. The film starts with the image of a young child's abdomen and suddenly someone starts going to town cutting into it. I handled the part where he got close to the tumor much better, probably because it wasn't actually cutting into a child. I kept seeing Eve's face on that kid. I don't want to watch my child have renal sparing surgery. I just don't. But I was pretty hypnotized once the kidney was being opened to get to the tumor. It reminded me of taking skin off of chicken.
I have no immediate plans for chicken.
Dr. Perlman explained some things about pathology that I won't try to tell you about. And I'm not just saying that you so you think it's too over your heads but I totally got everything she said. Because I totally got it all. I just don't feel like talking about it.
But I am so excited to tell you that I understood 99% of what the last four people talked about! Radiation? Check! I got that. Chemo? Totally. Late effects? Bingo. Palliative care and hospice? I don't want to get it, but I understand it. And we collectively cry.
Those of you who know me are aware I'm not a crier. But I got it all out last weekend. To the point that I needed to rehydrate with some boxed water.
There's the crying for the children we've lost. There's the crying for the what-ifs and the what-may-comes. I don't think I had cried for Eve since October 23, 2009. It's not my thing, but it felt pretty good last weekend.
So what did you miss?
The ugly cry. It's all fun and games until someone breaks out the Tammy Faye tears.


  1. When I read of Eve and your family's battle I am brought back to 1968 at a time when wilms was not curable and my most wonderful family did not ask questions. They were told we cannot save this child but we will do all we can to try and understand Wilms so that children after her can survive. It was a time when you didn't question doctors, you didn't look for other options, you stood there as they strapped your 5 year old down and did all they wanted so as to just maybe prolong her life for a little while and in hopes that her struggle would save others.
    Here I am at 47 years old still alive and reading of this brings back childhood memories, I am thankful that they used me as an experiment because of this I am still alive and have two beautiful children. I am thankful because of my struggles children now survive Wilms as I did but I am saddened because we stilll do loose some from the damn disease.... Thanks for this post....

  2. I also want to try and contact this Dr. Jeff Dome, I suffer from late effects of radiation and would love to speak with him of this, if you have any ideas on how I can do this please email me...
    I love you and your family, do not know you guys but in a way we are related, through the family of Wilms.... thanks for your blog,
    read mines if every you get a chance

  3. sorry for the three posts in one day lol but I found this wonderful Dr. Dome and have emailed him...
    have a great holiday!

  4. I feel the exact same way about the "How do you do it"
    I always want to ask them what the heck do you expect me to do?

    Folks try to pass it off as some folks couldn't or wouldn't. But I don't think anyone with the true heart of a mother or father would hesitate to do whatever it takes for their child and really not think twice about doing so.