by Heidi Willis
"So it's bad, then?"
He runs his fingers through his hair. I can tell he's frustrated with me, but I can't let up. I'm like some pit bull that's got her jaws around a neck and I can't let go.
"It's bad if it doesn't work. It's good if it does. That's as certain as I am. This works, Mrs. Babcock. It works most of the time. More often than not."
"But?" There isn't certainty in his voice. He isn't talking like a doctor talks who has a better than odds-on chance.
"I just like to have a back-up."
"And we don't?"
"I'm working on it."
I let him go. He walks down the hall and disappears around a corner. I watch way past when I can't see him. I stand in the hall while nurses walk around me, and parents move in and out of rooms, and dinner trays are collected. I think how tired I am, and I think how Dr. Benton must feel responsible for keeping Ashley alive, like I do. For the first time, I wonder if he has a wife and kids at home. How can he run his office when he's down here in Austin 7 days a week? I realize it's Sunday and he's here, even though it must be his day off.
When I go back in the room, Ashley is asleep, her breathing like loud, punctuating sighs. Travis was called as a fill-in on a remodeling job today, and Logan is practicing for a gig with the band next weekend, and I'm alone.
I try to read, but I can't concentrate. I don't want to turn on the TV and wake Ashley. I think about going to the cafeteria, but the thought of food makes me nauseous. I finally decide it's as good a time as any to pray, so I close my eyes and wait for the words to come. But I don't know what to say. "Help us," is the best I can do. I wait for God to speak to me. But he don't.
And then Donna Jean walks in.
"Am I interrupting," she whispers.
I'm so glad to see her--anyone--that I want to throw my arms around her. I take her down to the family resource center, which is empty tonight, and pour us both a cup of coffee. We sit on the couch.
Immediately, she opens a black bag she is carrying and pulls out a laptop. "I convinced my company to donate this to you. It's old," she says, shrugging off my protests. "It was just gathering dust in a supply closet, and it seemed like something you might be able to use to help you. Or at least maybe occupy some of your time."
She opened the laptop and turned it on. "I thought you might want to research other options. You know--if the desensitization doesn't work."
I feel such a rush of gratitude that I don't even hate her for knowing the word.
"I took off all the work programs, but there's still word processing and Internet. Also, I put on some games. And it has a DVD player, if Ashley wants to watch something in the room." She opens up the Internet. "Do you have an email account?"
"Travis has one. And the kids. I don't. I just never had time." What am I? An 80-year-old codger? What forty year-old don't have an email?
"We can set one up for you if you want."
With a few clicks she signs me up, then hands me the laptop and a notebook. "Here are a few sites I thought might be interesting. And a few keywords to Google. Let me know if there's anything else you need."
"Are you leaving already?"
"Bible study starts in an hour and a half. I'm leading the ladies group."
I don't know if I should hug her or something. She stands, ready to go. With the laptop on my knees, I try to stand but it nearly slides off. I barely catch it before realizing my feet are caught in the cord. I clumsily fall back onto the chair.
"It's okay." She laughs, handing me the pen that rolled off the couch. "I can see myself out. Call later, if you want. Let me know how it's going."
I watch her leave out the glass doors and disappear down the hall before turning back to the computer.
I start with the websites she's written for me. One is a message board for parents with diabetic children. I don't know where to start so I click on the first post: "Anyone heard of Apidra?" There are ten responses to "kaylasmommy," and I learn that Apidra is one of the newer insulins on the market. I write the question in the notebook: "Have we tried Apidra?"
The second post is from "findthecure" and is titled "Nailing the 504 to the school room door." There are 123 responses. Seems like I'm not the only one having trouble with a school that doesn't get how dangerous diabetes is.
The third post is from "mike315." "Endo from hell!!!!" "Our family moved last month and I am having a hard time finding a new endo for my four year old son. The only one in our town wouldn't give us an appointment for six months. When we called and said it was an emergency, because we couldn't get Evan's numbers down under 200, he told us not to worry unless they stayed above 300 for more than a week. Also, when we asked if we could start the process for getting Evan a pump he told us it was a waste of money and that people on pumps get lazy about controlling their BS. Anyone here know of a good endo in the southern eastern part of Georgia?" There are 97 responses.
Before I know it an hour is gone, and I'm still working through the forum. I've learned schools are far from perfect, families routinely fall apart fighting over how to deal, people are firmly on the side of pumps or shots, but not both, insurance is the enemy, and we should thank God for Dr. Benton, because I don't see anyone who has a endocrinologist as good as him.
The door opens. I look up and see Ashley, her hands on her pencil-thin waist. "How long you been here?"
"A while. How did you find me?"
"Betsy said she saw you and Miss Donna Jean come down this way. What are you doing?"
I pat the couch next to me, and she sits and looks over my shoulder. "Where'd you get the computer?"
"Miss Donna Jean. Look what I found." I show her the message board and then back out to the list of forums. "They have a whole bunch of groups. There's one for kids your age with type 1."
"Are any of them allergic to insulin?" She's always known how to cut to the chase.
I hand her the computer. She types quickly. I watch her fingers flying over the keyboard and wonder where she learned her way around the computer so well. She don't find anything in the message board, so she backs out into Google and does a search for "insulin allergy." One million eight hundred thousand results pop up.
The first one looks like just a definition, but the second one is Insulin Allergy Successfully Treated. She clicks on it as fast as a fish on bait.
It's a university study profiling some kid a little older than her. She skims through the medical jargon and slows on the description of the kid. His symptoms sound like hers. They use the same method Dr. Benton is starting Ashley on. The story is extremely vague on specifics. It don't tell us how he survived for six months on barely-there insulin levels, or how much weight he lost, or when in the process the hives went away, but it did end with him getting off steroids and taking further insulin without problems, and that's all Ashley needs.
"See? This'll work!"
"Let's see what else is out there. Just in case. Let's see if there are any plan C's."
The next was a case where a type 1 woman was treated with a mix of insulin and steroids, just like Ashley had the last few days. The next few were more explanations about what it is and how rare it is. One was a medical study about the causes of it and how the different kinds of insulin provide alternatives. The last of these mentioned that many people who have allergic reaction to human insulin are fine with beef insulin.
"Insulin from a cow?" Ashley stuck out her tongue and bit it. "Ewww!"
"You'd rather have pig insulin?" I suggest, reading further.
"How do you think they get the insulin out of a pig?"
"I'd think the pig would need it's own insulin. Don't you?"
"Maybe they found a way to increase how much it makes, and they can take out the extra."
I consider this, as outlandish as it sounds. Maybe they could do the same with me. Maybe they can make me produce extra, and I could donate it to her.
I write the new options in my notebook:
Beef insulin?
Can a relative donate theirs?
On the second page there are several "ask the doctor" sites where people write in and ask the doctor to diagnose them based on email. None of these is what we're looking for, although one doctor does say how rare it is to be allergic to insulin. We find this not at all helpful.
We slog through another page or two of websites, Ashley getting more discouraged with each page until we find the one we didn't know we were looking for. It's a science magazine article with the headline "Mice Cured of Type 1 Diabetes; Humans to Follow."
"A cure?" Ashley is brimming with hope, tapping the down arrow furiously as I try to keep up with her.
"Slow down," I say irritably, trying to understand the words on the page. It's a vaccine. A simple vaccine that's already being given for other diseases. It's been shown to stop the immune system from attacking the pancreas. "It cured them." The words wash over me.
"I'll do it," Ashley says, her eyes glued to the screen. "I'll try it. It's safe, right? If it's used for other diseases, it has to be safe to use."
"Why hasn't this made the news," I add, not wanting to admit that just two weeks ago I would've turned the channel on the news if that tidbit came on. Who cares about field mice being cured of some disease you know nothing about?
I write down the web address in my notebook and a few sentences to remind me about it, not that I could forget. I'll show them to Dr. Benton later and ask if he can find out more about it.
"That's the answer! I know it!" Her eyes are shining again. "God's gonna cure me!"
My heart sinks to my knees. "Baby, don't go getting your hopes up. . ."
"Why not?" Suddenly she's a tempest whirling on me. "Don't you want me to get better? Don't you want this whole thing to go away?"
"Of course, I do--"
"Then stop acting like God can't do it. If we believe, and we ask, God will do it. That's what the Bible says. Believe and ask."
"It's not that easy, Ash."
"It's as easy as believing. You don't have faith. That's your problem."
She's right. Lord Almighty, she is right. I have no faith. I seen my father waste away from cancer even as he was praying for God to heal him. I seen people lose their farms when the rain didn't come, even though they prayed on their knees for God to send it. There are starving kids in Africa, suffering Christians in China, soldiers in battle all praying for God to save them. Our church folks gather every Wednesday to pray for God to answer these prayers. And he don't. Least ways, not all of them. How am I supposed to believe he'd hear us?
"Life is more complicated than that. It's more complicated than throwing your wish list into some God-wishing-well and thinking everything will come out roses."
"No, it's not." She stands, unsteady but ready to leave. Tears are filling her eyes, and there's more hurt than fire there. "It's just that easy."
As she starts out of the room, she stumbles and grabs the door to keep herself up. I'm at her side in a blink, but she pushes my hands off. "I want to go alone. You stay here and find us a plan C."
"Ash, baby, I'm sorry." Just as suddenly as it came, the fire dies in her. "It's okay." When she touches my arm, it feels like a feather. "I'm not mad, Mama. I have faith enough for both of us."
~~~~
It don't take long for me to become computer-savvy. That's what Dr. Benton calls me, but I'm not sure he always means it in a positive way. I'm the bulldog. He's the neck.
I admit I can be overbearing. "It just ain't right for the woman to wear the pants in the family," my own mama used to say. But if I became my mama, Ashley'd die lying here in this hospital with people just twiddling their thumbs around her. Travis is either working or trying to find business for Bob; he oughta get paid twice for that. I want him here, but that's not possible now. Without his job, we have no insurance; without no insurance, we got no way to pay for all this. So Travis works all day, every day, and is hardly at the hospital, which I don't hold against him, but he has his job, and Dr. Benton has a job too, with lots of patients and an office, and if I'm not here to fight for Ashley, ain't no one else to do it.
I keep copious notes--that's what Logan calls it--about everything I find on the Internet, and I tear the pages out and give them to Dr. Benton when he comes at night. He looked at the mice experiment and shot that down. "It's a great idea, but it's a long way from being anything significant. They're still testing it. Right now, in mice, it only works a little, for a short period of time. Like it reverses the disease partway, for a few hours. Then it's back. Maybe in a few years this would be an option." He hands the paper back.
I keep at it though. Day after day, new things. Every time I Google the same things, and the same 1.8 million hits show up. I slog through them, page after page, thinking something has to be there. Out of 1.8 million web pages, there has to be an answer somewhere.
"There's an insulin you can inhale, like one of those asthma things. You think we should try that?"
"They took it off the market."
"Why?"
"Not enough money in it."
"How can there not be enough money in it? People got some kind of emotional attachment to sharp needles?"
"How about this one," I say a couple days later, handing him yet another paper. "This says diet and exercise can completely reverse the disease in some people."
"That's for type 2," he says, handing the papers back to me without even looking.
By the sixth set of notes in my awful chicken scratch, he brings in an old printer and sets it up on the desk in Ashley's room. "Now you have your own control center," he says. "This way you can spend more time researching and less time writing."
I print everything I come across: pharmaceutical evaluations, newspaper articles, message board posts.
My own message board post remains mostly empty. There are over five hundred hits on it and a handful of replies that read, "How terrible! I've never heard of this. We'll be praying for you."
Ashley has made a few friends on the "kids with type 1" forum. Their posts are the kind of normal I'm now hoping for Ashley. "Cut myself cutting up an orange today. I decided 2 test, since I was already bleeding. Hate 2 waste blood! lol" "Found sour apple glucose tablets! yum! much better than fruit punch!" "Anyone know how 2 hide pump under prom dress?"
I read some of them to Ashley when she's not up to reading them herself. Sometimes she wants me to write back, so I write what she says and add at the end, "Written by Ashley's mom. Ashley--12, dx t1 may, dx insulin allergy june."
One day she receives an email from a girl on the forum. "Check this out!"
It is a link to a newspaper article somewhere in Europe. I skim it, then go back and read it again. And then again. And I print it out and run down to the nurses's station.
"Do you know when Dr. Benton will be in?"
She shakes her mile-high hair and keeps clicking at her keyboard. I thrust the printout in her face. "Have you read about this? Do you know anything about it?" She glances at it and hands it back.
"Sounds like some kind of scam to me."
"It's real. It's from a real newspaper. It was online."
She shrugs without looking up. "There's lots on the Internet that's not real. People make this stuff up for kicks."
"It's not." I take the paper back, but now I'm not so sure.
I go back to the room and read it again. Then I Google it, but I can't find anything else except the article. Maybe it's a fake.
By the time Dr. Benton arrives, I'm more nervous and less excited about giving it to him. I've learned hope can be scary because at the end there's usually disappointment.
"What have you found for me today?"
I hand it to him real slow. "I'm not sure it's anything. It's probably not even real."
"I'd be disappointed if you didn't have something." He smiles as he takes it, but as he reads his face grows serious. "I've heard about this. A year or so ago. I'd completely forgotten about it."
"So it's not a hoax?" My heart starts
beating faster now.
"No, not a hoax." I let him read more, biting my lip to keep from interrupting.
"Can I keep this?"
"It's true? That British doctor really cured diabetes with baby teeth?"
"Yes, it's true." He seems distracted suddenly, folding the paper and putting it in his pocket and checking Ashley's vitals with barely a word. Ashley sleeps through it all, which is what she does most of the time, now.
"I got her baby teeth. All of them. I can bring them in. Can you cure her?"
"No. I can't do that."
"Could he? That doctor in the article?"
"No. I don't think so."
He's not looking at me so I pull on his arm. "Dr. Benton, look at me." His eyes meet mine, but I can't read them. "What does this mean?"
"I don't know."
"But it means something?"
"Yes." He runs his fingers through his hair in that way Travis does when he's figuring how to pay the bills. "It means something very big. Possibly. But possibly not."
"Are you kidding me?" His eyes seem to focus on me, like he suddenly realizes I'm in the room.
"I'm sorry. I mean, I don't think that baby teeth are going to help now, but it may be the lead on something even better. I don't know for sure. I have someone I need to call, and I need to look into a few things. So no, it isn't the answer, but it might lead to the answer." He grabs me into a hug, a very undoctorly thing. "You keep looking, Mrs. Babcock. This is good stuff. We might get there after all."
~~~~
When I talk to Travis on the phone he don't get it. "What do you mean they cured diabetes with baby teeth?"
"I don't know how. I ain't no doctor. The article just said the doctors took something in the baby teeth and made them grow new insulin cells. And the kids aren't diabetic anymore."
"And Dr. Benton thought he could do that?"
"Not exactly. But he seemed to think it meant something. Like, it was something he never thought of before."
"But it's not our plan C?"
"It sounded like it might lead us to plan C." I hear him sigh on the other end of the line. "It means something, Travis. It does. If you could have seen the look on his face."