Some Kind of Normal (29 page)

"The Lincoln, I think," Logan answers and looks at
me, but I shrug 'cause I got no clue which is which. "It's the
Lincoln or the Jefferson. I can't remember which is the square and
which is the round one."

We fly so low over the river I'm afraid we're gonna
put down in water, but we land smoothly in Virginia, hardly any
bumps at all. We let everyone gather up their stuff and leave
before us.

The airline has a wheelchair at the door, and Ashley
don't fight it the way she usually does. Dr. Jack meets us at the
baggage claim to take us to the hotel near the clinic. The first
thing I notice when we leave is that D.C. is just as hot as Texas
in August, and the air is so thick I could serve it up with jelly
on toast.

Dr. Jack don't talk much about the coming days on the
drive. He points out places of interest--the Pentagon, Arlington
Cemetery, the Potomac. He asks about our trip, and how we've done
with the press. He says he's gotten requests from Good Morning
America, The Today Show, and Dateline to do interviews and to
follow the stories of a few of the participants.

"I'm trying to get the real information out there
about this. It's not as though this kind of stem cell therapy
hasn't been used before. We've cured spinal cord injuries,
leukemia, even Parkinson's disease. Yet I'm shocked how many people
have no idea what it is. Have you ever been to a lacrosse game?
We're suppose to have a winning team this year."

I'm worried about the press. I've had enough
attention to last me a lifetime. Back home, even if people could
understand, they'd never get past him. Him and his past involvement
with embryos. I look at him as he talks so casually and wonder if
he changed his mind about embryos because he thought it was wrong
to test on babies, or because it just wasn't very productive. It's
not the stem cell trial that's the lightening rod, I think. It's
him.

Up to now I just been seeing him as the doctor, but
suddenly I see him as a person like all of us. A mixed-up past full
of mistakes and a second chance to make it better. Just because he
turned away from those mistakes don't make it wrong to use the
lessons he learned.

He don't mention the article about his daughter, or
the personal attacks on him. Some parts of our past, I suppose, we
got to put a little further behind us than others.

The rest of the trip, Travis and Dr. Jack banter
about sports while the rest of us stare out the windows. I can't
believe how many trees there are, and how tall they all are.
Everything around us is a haze of green. The roads wind up and down
over hills, around curves, until I think I might throw up.

At the hotel Dr. Jack helps us haul our luggage in
and tells us he'll be back in the morning for Ashley. "The rest of
your life starts tomorrow."

~~~~

After Travis is asleep, I slip out and down to the
pool. Logan's there, waiting. I shouldn't be surprised, but there's
hardly a thing Logan does that don't surprise me. He's sitting in
one of the plastic chairs drinking a Dr. Pepper and bathed in the
translucent green light of the pool. He smiles when he sees me and
pulls a chair from the table for me.

"I thought you'd be here."

I hold my hands up to him, empty. "I didn't bring
cigarettes."

He holds out his hand, one with the Dr. Pepper and
one with a small package wrapped in paper. "Neither did I."

I sit down and take the package from him. "What's
this?"

"Open it." He takes a swig of his drink and leans
back in his chair, head tilted back to the sky.

Inside the wrapping paper is a book. "1000 Most
Important Words," by Norman Schur. "What's this?"

"I figured you were about done with my SAT book, and
I thought it might be time to move on to something more fun."

Knock me over with a feather duster. "How long you
known?"

"Since you stopped looking at me crazy when I used
big words on you. I figured you were getting them from somewhere.
It just took a while to find out where." He takes the book out of
my hands and opens it to a random page. "See? This one's much more
interesting. It gives you definitions and contexts, so you know how
they're used in everyday language. And it tells you where the word
is from--you know, Latin or Greek or whatever--and what the parts
of the words mean so it's easier to remember them and figure out
new ones." He smiles smug-like and hands it back to me. "You'll
blow away every educated person in Texas with a vocabulary from
this."

I flip through it, giddy that I actually know some of
the words already. When I put it on my lap, Logan's already staring
into the starry sky again.

"Why do you pretend so hard you're a rebel?"

"Why do you pretend so hard you're dumb?"

The problem with Logan is that whenever he's being
smart-mouthed, he's more smart than mouthy.

"I don't pretend."

"And I'm not a rebel."

I think this would be the perfect time to take a
drag, but I've got nothing to smoke. "Jiminy, I wish I'd brought
the cigarettes."

"Why didn't you?"

I reach over and take his can and swallow half in one
swill. "I don't know. I guess it seemed the right time to
quit."

The truth is, how could I possibly keep slowly
killing myself by smoking when we're trying so desperately to keep
Ashley alive? If there were one thing I could have done in the past
to save Ashley, I'd have done it in a heartbeat to keep this from
happening. I don't want someone else to be thinking the same thing
someday while I'm lying in some hospital bed hooked up to some iron
lung, or whatever they do to you when you have lung cancer and
can't breathe no more on your own.

"I should get back or your dad will wake up and
wonder where I went."

"Mom?"

"Yeah?" Logan looks like he's going to ask something.
He stares hard at me for a minute, then his eyes dart away like he
just can't get it out.

"Good night."

"Good night." I'm relieved he don't ask, because I
feel in my gut it's not a question I want to answer.

~~~~

In the morning Dr. Jack comes to pick us up in a
rental car that he says is now ours for the next week, thanks to an
anonymous donor. None of us talk much on the drive over. It's not a
long way, but there are a million lights and every one of them
seems to be red. My stomach feels like it's being tossed around by
a wave. From the looks of the rest of the family, they feel it
too.

Baltimore's a big city. The buildings are crammed
together, and the streets are crowded as we wind our way through
them. The building we arrive at, which Dr. Jack says is not
technically a hospital but a center for clinical trials, is what
the 1000 word book might call imposing. Tall, red brick, white
trim, ivy climbing up the sides. He parks the car not too far from
the entrance and places a blue card on the dashboard. "If you park
here, you need to make sure everyone can see this, or they'll tow
you."

Ashley don't want the wheel chair, so we walk very
slowly. She leans on Travis as she walks, stopping every couple
yards to catch her breath. If I was a passer-by I'd think she was
having some asthma attack. It's mostly that she's just tired and
weak. Between the high sugars and little food, she's down under
eighty pounds, way too thin for her tall frame.

On the sidewalks there is a small group of reporters,
craning to see who we are. A few protesters are there, but nothing
like in Texas. A few shout angry words as we pass through them, and
a few hold political signs for candidates supporting stem cell
research. It's such a small and ridiculous group, I nearly laugh at
them. Other people are going to and from buildings around us, and
no one's giving them a second glance.

He leaves us as we get checked in. I know he's the
big wig here, but I'm still put off guard that he isn't going to
walk us through this.

Even after the mountains of paperwork we completed in
Texas, there's still more here. I hand it over to Travis and Logan,
but Logan hands it back to me. "You read it," he says.

Most of it is stuff we've read before. The procedure,
release forms, insurance forms, next of kin and emergency numbers.
There's a paper that describes some of the resources available to
us, including a message board set up just for members of the
trial.

"That's a good idea," Travis says, handing it to
Ashley. "That way you can make friends with people going through
the same thing and keep up with them, even when you're in
isolation."

"How long will I be in isolation?"

"A couple weeks, I think. Most of the time we're
here," he says, looking to see if there is an answer in the papers,
which there isn't.

"Can I still email my friends back home?"

"Of course," I say, although I wonder what they'll
talk about. They'll tell her about how school is starting and how
horrible the math teacher is and how much they hate having to take
showers in gym and how unfair the homework is, and all Ashley will
think is that she would give all the flute lessons in the world to
be a part of these mundane things.

There's one form that explains the steps of the
process and at what points we can change our minds. I suppose it
should be of comfort that there are so many times we can back out
if we want to, but since there's no other course to take, it isn't
so much an option for us. Forge ahead, my daddy would say.

The first test--testing to make sure Ashley still has
some remaining functional beta cells--was done at Children's in
Austin, but they want us to do it again here since her blood sugars
have been so consistently high. Apparently, it's like being a mom
of five hundred kids: those little beta cells trying to control all
that sugar just burns 'em out. It's a simple blood test, and we
wait until a new doctor comes to tell us the results.

He thrusts out his hand and introduces himself. "Hi,
I'm Dr. Wong. I'll be the hemotologist working with you during the
trial." He's bouncy and young, almost too young, and I consider
asking to see his diploma.

"What is it you do?" I'm surprised at how bold Travis
has gotten lately. He's never been one to speak his mind, but I can
hear in his voice the same questions I have in my head:
Are you some Doogie
Howser, 'cause you look thirteen and too young to have any real
experience.

"I'm a blood doctor. I specialize in diseases of the
blood. In Ashley's case, I'm the one who removes the bone marrow,
and I'll help in isolating the stem cells. I also specialize in
autoimmune diseases, which becomes important when we try to keep
your body from attacking the new beta cells we hope to give
you."

He sits with us and looks at the file they've just
begun on Ashley, which I imagine will get thicker and thicker as
the weeks go on. For now, it's thin, and probably completely
unnecessary for him to look at, since it's all stuff he knew before
he came in anyway.

"Speaking of beta cells," he continues, "it looks
like you are barely hanging on here, kiddo." He flashes a smile of
impossibly white teeth. "You still qualify, but just by a hair. You
have the lowest amount of working beta cells allowed. It's a good
thing we got you here now. They won't be working too much longer at
this rate."

"But the therapy will still work, right?" I say.

"We don't know. There are no guarantees here. Even
with a whole batch of beta cells, it could be troublesome. But some
are better than none, so let's go with that, okay?" Another flash
of teeth.

"What's the next step, then?" Travis asks.

"We move Ashley into a surgery room, and we take some
bone marrow out of her pelvic bone."

"Today?"

"Right now. We have a team assembling upstairs."

"They're doing surgery now?" Ashley asks.

"Not surgery, really. More of a procedure. Didn't Dr.
Van Der Campen go over this with you?"

"Yes, but it's been a while," says Travis. "We've
been a bit overwhelmed with it all and can't remember all the
details."

It takes Dr. Wong hardly a minute to explain the
process. She'll be under general anesthesia so she won't feel a
thing. They'll stick long, hollow needles in her to take out the
marrow, and bam! She's done.

"That sounds so easy," I say.

"It is. Getting the marrow isn't the hard part. The
hard part will be to isolate the pluripotent stem cells and put
them to work." He stands and shakes our hands again. I'll be back
as soon as everything is ready."

Once he's gone, Travis turns to me. "What the Sam
Hill is a pluripotent stem cell?"

I look to Logan who shrugs. "Don't look at me. I
didn't understand half of what he said. I couldn't think, I was so
blinded by his teeth."

"They're cells that can become anything." Ashley's
voice is tired but knowing. "Like embryonic stem cells. That's why
researchers want to study embryonic cells: they can turn into
anything in the body." We all look at her with amazement.

"What?" she says. "That last hospital stay was really
boring. I had to do something."

"Well, go on then," says Logan, sitting back
down.

"Most adult cells are already assigned a job. Skin
cells make more skin cells. Brain cells make more brain cells.
Blood cells make blood cells. But there are stem cells in the bone
marrow, pluripotent cells, that can become anything. At least
that's the theory."

We let the word theory hang in the air. It's a
reminder of how uncertain this all is.

When they come for Ashley, we let her go with the
unanswered questions surrounding us. All the what ifs that are in
front of us that start here.

What if they can't get enough stem cells?

What if the stem cells don't work?