Some Kind of Normal (23 page)

"So she won't be allergic that way?"

"No, the allergy is still there. But at least when we
get it to the liver full strength, it has a shot at bring the blood
sugar down a bit before the allergy resists it. Like I said, it's
not long term, but it may buy us a little time."

"Okay," I say. "Let's do it."

"Wait a cotton pickin' minute," Travis says, going
over to Ashley and putting his arm around her. "Y'all are so
gung-ho to try new things. What's this going to do to her? I've
seen what it does when she gets too much insulin. It nearly kills
her. What happens if you give her too much? Won't it kill her that
much faster?"

"Shut up, Dad." It's Logan, behind me, who's now
standing.

Travis and I are dumbfounded, and Dr. Benton seems
embarrassed.

"You all talk like Ashley isn't even in the room. And
you," he turns, fire in his eyes, to his dad. "How can you even say
the word kill when you're talking about Ash?"

I think he would storm out of the room if he could
take Ashley with him.

Ashley, the youngest, the one in the middle of it
all, is the one to speak first. "It's okay Logan. I'd rather they
talk in front of me than behind my back. I want to know what's
going on."

"Ashley is right," Dr. Benton says. "She needs to
know what's going on. She needs to have a say in what we do. It's
her body, her life. And the rest of you," he looks at Travis and
me, "need to come together. Fighting each other isn't going to help
Ashley."

I think if this were a movie, it would be the part
where he would leave in a dramatic flourish and the scene would
fade to black as we all look at each other sheepish-like. But it's
not a movie, and so we stand all awkward, looking at each other
until Travis finally says flatly, "I'd like to know the risks of
putting insulin directly to her liver."

~~~~

It turns out there aren't a lot of risks. Since
Ashley's sugar levels are so high, and she isn't reacting to the
insulin well, the amount he wants to give her ain't going to plunge
her anyway. He wants to start slow, just a little, and so we all
decide to do it, Ashley included.

In the morning it's clear Ashley is already better.
She's awake and sitting almost straight up when we arrive after
breakfast. She's got the computer on her lap and is reading the
message boards. It's Sunday, so no one from the church will come
today, and Travis and Logan both stayed the night and have the day
off today.

"You up for doing something?" I ask.

"I want to know about the clinical trial," Ashley
says.

I expect an argument from Travis, but he says
nothing. As I hold the folder of information, I hesitate. Opening
it is like opening a bag of worms. The fragile peace we have is
built on mostly denial and avoidance. But Travis sees me hesitate
and he nods, so I open it and we all scoot closer to the bed where
we spread out the papers.

For the first time, we sit down as a family and look
over Ashley's medical records and the paperwork for the trial, and
talk about it together. Ashley asks questions, and I'm surprised
that I know the answers to most of them. Logan fills in where I'm
blank, and Travis listens, mostly trying not to say something
explosive.

About twenty minutes in I realize he is really
listening. Not just listening to find something wrong, or to be in
the same room and not be accused of fighting, but really
listening.

People talk about light-bulb moments--that instant
where suddenly everything makes sense. I ain't never had one of
those until reading the process papers out loud to Logan, Ashley
and Travis.

There's parts of the papers that are all jargony,
full of big words and letters Logan calls acronyms. I think it must
be the IRS or IRB or FBI or FDA or whatever letters are supposed to
be governing it. It sure ain't written for normal folks. But
there's a part of it Logan says summarizes the trial, and he wants
us to read it. I don't know why he don't tell us what's in it, but
he says he ain't sure what it means and he wants to see what we
think.

Travis won't read it. It's like he thinks it might
send him to hell just by touching it. So I take it, skimming over
all the parts with the long words and coming to the section with
the heading "METHOD." Logan points to the paragraph.

After withdrawing a blood sample from the patient's
bone marrow, stem cells are harvested. The patient receives two
weeks of drug treatment to suppress the immune system, along with
antibiotics, and is kept in isolation to protect him from
infection. The extracted and conditioned stem cells are then
injected back into the patient.

"Well? What does it mean?" Ashley asks.

"I think," I say, suddenly understanding the
significance of what Logan is trying to get across, "it means the
stem cells come from you."

Ashley, who is unaware of all the hullabaloo between
her dad and I, just says, "Cool. So I'm healing myself?"

Travis takes the papers out of my hands to look for
himself. He flips through a couple and then comes back to the one
paragraph I read. "Can they take stem cells from adults? I thought
only unborn babies had them."

"No," Logan answers, as though he is some expert,
which I imagine after all the hours he is spending on the computer
he probably is by now. "Adults have stem cells too. Some researches
have found cells in muscle, skin, the brain, eyes. Even baby teeth
have them."

I think about the paper I gave Dr. Benton about the
baby teeth curing a diabetic. Suddenly, I realize that is what
started all of this. This trial is what Dr. Benton meant when he
said it could mean something big. I started this, I think. The bad
between Travis and me, the good for Ashley's future. I did all
this.

"So why bone marrow?" Travis asks. "Why can't they
take it from something less invasive?"

"Bone marrow is still the most hopeful because it's
been proven it can be used to recreate any type of cell in the
body."

"So this has nothing to do with fetal stem cells?"
Travis is still hunting through the papers, afraid to find that one
sentence that will kill the possibility.

"It's just her," Logan says.

Travis stares out the window for a few seconds, and I
know his mind must be swirling with the same questions I have. Why
haven't we heard of this before? If adult stem cells work, why are
we using fetuses? But now is no time for politics. And it's Ashley
who brings us back into the present.

"Dad?"

"Okay," he says. "Let's go through the papers again.
Then we can look at the application."

"Cool," Ashley says.

~~~~

Her blood sugar is down to 245 by nightfall. Betsy
says we can't bring it down any faster or her body will react like
she's having a low, even when she's not, but we're happy for a
number in the 200's. Ashley seems to be much better already, not
dozing off every few minutes and breathing a bit easier, though
that might be my imagination.

It's almost nine by the time Dr. Benton comes to
visit again. I notice for the first time how tired he looks. Even
when he smiles, the dark places under his eyes show, and he isn't
quite as enthusiastic as when we first met him. I realize that all
this time he's been keeping up his office back home, and traveling
to Austin every morning and night to see us.

"I think we're ready," Travis tells him.

As he pulls up a chair to join us, other things seem
to be weighing on his mind. "That's great," he says, but not at all
enthusiastically. "I'll call Jack in the morning. I can fax your
application over to him and get the process started as soon as
possible."

"Fax it? Can't we give it to him when he comes
in?"

"Oh, Jack's not at this hospital," Dr. Benton says
surprised. "Didn't you know that? He's back at the Johns Hopkins
Center for Clinical Trials in Baltimore."

"Maryland?" I asked.

"Yes. I thought you understood that. I'm sure he
mentioned that at lunch. It's in the paperwork, I'm sure."

"When will he come back down to do the surgery?"

Dr. Benton looked from Travis to me, obviously a
little uncomfortable. "He's not. The trials are in Baltimore. You
have to travel there for the treatment."

"I get to go to Baltimore?" Ashley almost squeals.
"Cool!"

"We can't take her to Baltimore," Travis counters.
"She's not well enough."

"If she wasn't, we'd medevac her there, but I think
she'll be fine. She's responding very well to the direct infusion
of insulin, and the new corticosteroids. She should be strong
enough in a week or so. There's not a starting date on the trial.
It's whenever she can join."

"How long is the treatment going to take?"

"Can you take time off?"

"Will we get to ride in an airplane?"

"The insurance--"

The questions are coming fast, the practical side of
this taking the upper hand over the grittier aspect of medicine,
but it's Dr. Benton who cuts to the heart of it all.

"The cost of the entire treatment is covered by the
trial. But you do incur the cost of all the travel. This first trip
itself will be at least a month."

"First trip?" Travis says. "I thought the treatment
was done all at once."

"It is. But Dr. Van Der Campen will want to do follow
up visits with you, tests and such, to make sure it's working well,
gauge complications, evaluate what needs to be done better during
the next trial phase. Those visits are usually pretty short, but
you'll have to check with him about how often you'll need to go
back.

"Also, you may want to prepare for the
publicity."

"Publicity?" The idea of anyone wanting to know
anything about us is crazy to me.

"There's already been a bit of press about this.
There always is when stem cell research is involved. It's a great
unknown, and there are very opinionated people on both sides. It
makes for good ratings, so it gets press time."

"But this isn't the same kind, is it? It's got
nothing to do with abortions or anything, does it?" I see Travis's
acceptance falling apart.

"Oh no. The stem cells will come from Ashley. But
it's a new realm of medicine, and people are always interested in
the possibility of new cures, as well as the idea of stem cells.
There's strong emotions attached to those words. You'll find some
people very enthusiastic about it, people like you who are hopeful
it will be the miracle cure, and others who will be in strong
opposition to it."

Logan grabs the brush off the desk and tosses it to
Ashley. "You may want to use that, first, sis. Hey! I can dye your
hair!"

"Not over my dead body," Travis and I both say at the
same time, and we all laugh, and it feels like the family we had
before the kids grew up, when we was close and liked being
together.

Dr. Benton looks at the charts for the day and has
Ashley test her blood once more before he goes. "Things seem to be
on track here. Unless something changes drastically and the
hospital calls me, I probably won't come in tomorrow to see you."
Ashley puts on her best pouty face, which makes him laugh as he
tousles her hair. "Don't worry. You'll soon be feeling so well that
all the guys will be stopping by to see you." He says his goodbyes
to us, and when he leaves it feels like something strange has
happened, a passing of the torch or something.

I should feel better. The application is done.
Ashley's blood sugar is down. My whole family feels like a family
for the first time in a long time. But my gut tells me a war is
brewing, and we ain't even seen the tip of the iceberg yet.

~~~~

It takes less than three days for the news to hit.
Some girl up in New England is the first. She's older than Ashley,
almost twenty. It's not on the major channels, but we see the local
report on the Internet one night while browsing for more
information on the trial. The camera crews catch her leaving a
restaurant. She's wearing a red and white striped waitress uniform
shirt and carrying a dirty apron. Surprised by the small crew
outside, she blinks in the glare of the lights. They fire questions
at her, holding out the microphone hoping to see her hang herself.
She mumbles and pushes past them and leaves in a beat-up car.

Without a subject to engage, the reporter walks
through the small group of people who had gathered because of the
camera, and holds out the microphone to whoever wants to get his
uninformed opinion on TV.

"I think using people as guinea pigs for some medical
experiment is immoral!"

"Did you say stem cell treatment? Isn't that like
what they did with that sheep, Dolly?"

"I think it's great they can use aborted babies. At
least something good is coming out of that, you know?"

"She doesn't even look sick. I'll be she's getting
big bucks to be in that trial. You know--like giving plasma or
something. Only this is more dangerous. Didn't you say that? That
this is dangerous?"

"I heard that, too--that it's real risky because it's
never been done before. I hope she's got a lawyer in case anything
goes wrong. Then she can sue the doctor if she dies."

"What idiots," Travis says.

"Do we need lawyers?" I ask.

The second report is in California. This one's on
some cable news station, one of many stories all displayed at the
same time, with three boxes and two scrolling news lines at the
bottom. It's the medical report of the day--a two-minute update on
breakthrough stem cell miracles. A boy this time, about Logan's
age, being whisked into his house by his dad. The reported stands
in front of a handful of protesters on the sidewalk with signs that
read, "Who says your life is more important than his?" above a
sonogram picture. I keep waiting for one of them reporters to say
it's got nothing to do with babies, but they don't. They actually
don't give much information at all. They let the crowds do most of
the talking.