by Heidi Willis
"You'd let her die?" I'm shaking almost as hard as her. "You believe so much in some righteous stand you'd let your own daughter die?"
Travis begins to cry. I've never seen him cry. You'd think, in all the years we been married I'd have seen him cry, but I haven't. But here in the hospital corridor, he sits on the floor and cries.
"How can I choose between God and my child?"
And I realized why it was never so hard for me as for him. My child always came first.
~~~~
Chapter Twenty
We call Ashley's pump her Molotov cocktail. Every few days the combination of drugs in it changes. They tried all the kinds of insulin and ruled out everything but aspart, not because Ashley tolerates it well, but because it's the least likely to kill her. They mix the insulin with steroids, something like Benadryl, I think, that's suppose to keep her from blowing up with hives and breathing funny, except they are drugs with longer names I can't pronounce, with lots of o's and p's and y's and n's in them. None have worked well, but every time they try a new one Ashley and I cross our fingers.
The fact that they can't try things faster is frustrating the heck out of me. If she tests at nine in the morning and is given the new cocktail, then tests no different at ten, or at eleven, or at twelve, I ask if we can change and try something else.
"It doesn't work that way, Mrs. Babcock," they say. "It takes a long time for some of this to work, and then we have to let it go through her system and out before we can try something else."
Meanwhile, Ashley's not getting better.
The evening after the seizure, Dr. Benton visits again. I'm afraid he's going to press about the trial. Since the crying incident, Travis and I have a fragile truce that involves not talking about anything important. It's amazing how two people in the midst of a life and death situation can sit around a hospital room and talk about things like the possibility of new linoleum in the kitchen at home or debate the dangers of bumper stickers.
But Dr. Benton don't mention the trial. He sits on the edge of Ashley's bed and pats her leg and says, "What do you think about us getting rid of Max?" Max is the name of her pump. It's what she would have called a dog had we ever let her get one.
"Max doesn't seem to be doing the trick we hoped. And we've about run out of options for what to put in him. Your body is a little resistant here, anyone tell you that before?"
Ashley manages a smile and looks at Logan. "He's the rebellious one." Her voice is still faint, but stronger than before the seizing.
"I'd like to try something else."
"I thought we'd run out of options," I say.
"Not quite. This isn't a long-term solution, but it might help for a while. I'd like to put the insulin directly into your umbilical vein."
"My what?"
"How's that gonna help?"
"When we give you shots, or even with an insulin pump, the insulin goes in and goes through your blood stream," he points to his own stomach and then draws a line with his finger up to his heart, "and then it goes through your heart and back through your blood stream," he drags his finger down his arm and up and down his torso and leg and up back to the start, "and when it finally gets to your liver, it's diluted. I'd like to inject it directly into the vein that will take it to the liver, full strength, faster."
"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 da
d 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.
~~~~
Chapter Twenty-One
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.
I don't know how the media is getting the names. The stem cell doctor said they can't give out the names of their patients, and it's clear the patients didn't want to be on TV. I'm hoping it's not a matter of time before we're in the spotlight, too.
The hives are nearly gone now, and Ashley's swelling has gone down enough that it's easy to see how much weight she's lost. They've started her back on real food again, and I worry that when we leave the hospital there will be cameras, and people will look at her and think, "She's not sick enough."
On the calendar there are two dates circled in red. One reads: Ashley goes home. The other, ten days later, reads: Ashley goes to Baltimore; starts beta cell replacement treatment. I've spent the last two days gathering up my things, which have scattered like dandelion fuzzies in a breeze. A coffee mug in the kitchen. A towel hanging in the bathroom. Magazines and books in the common room. Cosmetics in the bathroom in Ashley's hospital room.