by Heidi Willis
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?
What if. . .
We don't let ourselves get that far. Tomorrow is too big a word for us, and so we take just today. We made it this far. That's good, isn't it, I ask myself. And I don't listen when the small voice inside says, not good enough.
~~~~
The anesthesia's slow to wear off, and because she's so weak to begin with they want to watch her over night. The room is really too small for all of us. I never thought I'd miss that room at Children's, but I do. It's clean here, and bright, but there's not enough chairs and no sofa, and no desk. Nothing that makes it feel warm. It feels like a hospital.
She wakes groggy and goes back to sleep, and at nine we finally decide to leave and go get something to eat. We find a fast food restaurant that's nearly empty and eat food that has no taste, but we don't care. We only eat because we have to.
I go to bed with Travis, not sneaking out, but curling under the covers listening to his snoring and the sound of the TV behind the wall in Logan's room.
When Brenda's father died a few years back, the church came behind her the way it's come behind us. They fixed meals and prayed for her and mowed her lawn. They sent cards and took her kids out swimming and to the movies. She said she never felt so loved, so completely surrounded by God and friends.
They mow our lawn and fix us dinner and pray for us. They send cards and invite Logan to hang out with their kids. And I've never felt more alone.
The room is so dark I nearly can't stand it. In our home back in Texas, we don't pull the blinds at night and the sky, all wide and sparkly, shines in. When we were young, Travis and I used to lie on the floor in front of the sliding glass door and watch the thunderstorms roll across the wide open spaces towards us, lightening streaking across the sky in great bolts of electricity. It seemed romantic then. Now I worry the electricity will go out or the oak in
the backyard will get hit.
Travis rolls over and lays his arm across me, pulling me close. "I thought you were asleep," I say.
"I was." He kisses my hair and tightens his arms around me, pressing me into his chest. It's the safest I've felt for a long time, and I curl into him, breathing him in and feeling the strength of him next to me. "I've missed you." He kisses my forehead, my cheeks, my nose, until he's pressing his lips on mine. It's more need than passion, but in the dark of the room we take what we can get.
I lay, hot and slightly damp, with my head on his shoulder, circling my fingers across his chest. "What if this don't work?" He understands that I'm asking about Ashley and not us, because in the last two months almost all that's left is Ashley. Little of us exists except for this, and this small desperate act to feel connected is related to Ashley, and everything now, even sex, is about keeping her alive, or keeping our will to fight to keep her alive.
"This will work."
"How do you know?"
"Because it has to."
I roll away from him and onto my back, staring into the black ceiling. "I don't think medicine works that way."
He pulls me back into him, wrapping his free arm around my waist and cradling my head with the other. "Then we find another way." His hands move through my hair, running from my forehead to the base of my neck and back up, this repetitive motion that used to drive me wild.
"I heard about other stem cell research."
His hands stop for the briefest of moments, and then resume. He don't answer and maybe this isn't the best time to bring something else up, but I do anyway.
"They can get stem cells from umbilical cord blood. It's like the embryo cell--pluripotent, or whatever that is--and it can become anything they want it to. She wouldn't even need working beta cells, so it wouldn't matter if she didn't have enough. They engineer them to be the beta cells."
"Can she get umbilical blood cells from anywhere? It seems like there would be some mass market to sell the stuff if it were that valuable."
"No. They usually use it for babies where the parents have already stored it. From when they were born."
"Parents think that far ahead? They're delivering their babies and suddenly think, Gee, I might need this umbilical cord in case my kid gets diabetes in twelve years?"
"Some do."
"And how does this help us? You didn't keep a little jar of it for old-time's sake, did you?"
I try to ignore the sarcasm in his voice. "No. But it's possible to use it from someone else, someone who's compatible, like a transplant."
"And where would we get that?" He's stopped stroking my hair altogether now.
"We could have another baby."
This does it. He rolls me off his arm himself and throws his hands over his head. "Jiminy, Babs. Do you hear yourself?"
"We never said we were done." I sit up and try to make his features out in the dark. "We just kind of stopped after Ashley. But it would be great to have a baby again, don't you think?"
"No. Not for this reason." He swings his legs over the side and gets out of bed. He walks to the bathroom and turns on the light, near blinding me, and shuts the door behind him. I wait. He turns out the light and washes his hands in the dark, taking a long time.
"Not to save Ashley, you wouldn't even think about it?"
He circles the bed and sits on the side, not laying down, putting his head in his hands. "Especially not to save Ashley."
I am so stunned by this I can barely speak. "Why?"
I can see him turn to look at me, but I can't see the expression. "Do you have any idea what that would do to a kid? Knowing their entire reason for being was to provide umbilical blood for their sister? And what, God forbid, if it didn't work out, and Ashley died anyway. What if they felt responsible for that? What if they felt their entire purpose in life was to save their sister, and they failed before they could even eat solid food?"
"We'd never let a child feel that way." I reach over to touch him, but he moves away.
"People feel what they feel, Babs. You can't make them or let them or keep them from feeling just because you want it that way. We are not creating another human life to be the donating stem cells for Ashley."
He fumbles in the dark for the shorts and shirt he flung over the chair and pulls them on.
"Are you going somewhere?"
"Out."
"You can't just leave."
"Watch me." He grabs the key card and lets the door slam behind him.
Behind the wall, the TV in Logan's room drones on. I pound on the wall. "I need a cigarette," I yell.
"Forget it," he yells back.
I flop back onto the bed. Three months ago I'd never have believed I'd be fighting with my husband and asking my son for cigarettes.
Or waiting around for my daughter to die.
~~~~
Chapter Twenty-Seven
"She'll be here anywhere from 18 to 28 days, depending on how fast the drugs work and how well the beta cells multiply," Dr. Van Der Campen tells us.
We nod and pretend we're listening when the truth is we've gone through this all before. We know the steps ahead; what we want to know is what he can't tell us. How many good stem cells will the bone marrow yield? How sick exactly will Ashley get with the drugs, and how well will they work? Will the transfusion of stem cells help her beta cells grow? In 28 days, will we be going back home?
"We start today with an infusion of drugs that will start to kill her immune system. We're giving her an antibiotic, too, as a backup, but any germ can be dangerous. From this point on, she's going to be in an isolation room. Every time you come and go, you will have to wash your hands in the sink right outside the door. You will need to wear gowns and gloves and masks to keep exposure to infection minimal."
We nod. It's simple enough. Don't kill Ashley by sneezing on her. We buy into this star wars kind of atmosphere. I'm thankful there ain't some huge plastic bubble she'll have to live in. Masks, gloves, scrubs. I can do these.
"The first thing we'll give is the cyclophosphamide, which is the immunosuppressant." He looks squarely at Ashley. "This may make you feel sick to your stomach. We're going to give you something that should help that, but it's still possible you'll experience nausea."
I try counting the syllables in that first sentence, but I can't remember the name of the drug two seconds after he says it.
She already has an IV in, so attaching the water-like medicine to the mix is anti-climactic. He flips the little switch. A small amount of fluid runs through the tube and into her arm. And then it stops.
"That's it?" Ashley asks.
"That's it," Dr. Van Der Campen says. I'll be back in 16 hours to do it again. Do you have any other questions?"
"Are the others already here?" Ashley asks.
"Others?"
"The other kids participating. Do they start today too?" I can see Ashley has in her mind that everyone is lined up through the hall, door after door of science experiments, all doctors synchronizing their watches and flipping the plastic lever at the same time. If she were to run an experiment, it would look like that. But this is life. And life's never that neat.
"Yes, two have already begun treatment. One is five days in, and the other is three days in."
"So I'm not the first?" There's disappointment in her voice, but I feel a rush of gratefulness. If something goes terribly wrong, it won't go wrong to us first.
Dr. Van Der Campen closes the clipboard and checks the drip lines again. "No, but everyone will go at their own pace. It's possible any one of you won't have enough viable stem cells to work with, or that the immunosuppressant drugs won't be as effective as fast. That," he says patting her feet through the blankets, "is why we have staff watching you 24/7."
He's on his way out when Travis says, "So what do we do now?"
"Wait," he answers. "You got a whole lot of waiting to do."
~~~~
Over the next few days there's nothing to do but
wait. Not even hope, since there's nothing going on except poison running through her veins. She gets sick like the doctor warned, but since she's not eating, there isn't much to come up. The drug information says she might lose her hair, but the nurses say she probably won't be on it long enough for it to be noticeable.
Boredom sets in. I've stopped Googling answers, because there ain't none left. One point eight million hits, and we've come to the end. Travis is right. This will work because it has to.
We read books and watch TV, but none of it sinks in. They are words, letters, sounds. They mean nothing.
Logan spends a lot of his time downloading new songs on Ashley's ipod and sitting with her as she listens, which is about all she's up to these days. Friends from church and school email songs with notes attached, and Logan faithfully reads them to her, placing the earphones gently over her ears and explaining why each friend picked that particular song. Brian Lee sends an entire mix, and Ashley cries the whole way through the CD but refuses to let us take it away.
Once I overheard Logan on the phone with the band, telling them to find another drummer, that he wouldn't be back for a long time. I asked him if he wanted to go back to Texas for a while.
"Several of your friends' families have offered to let you stay with them. And Dad is going back this week. We can send you back, too. You should be there. It's your senior year. You shouldn't miss that."
"I should be here," is all he'll say, and so that's the end of that.
Yolanda is taking care of the mail this week, and she sends an envelope with some she thinks might be timely. Inside are Logan's SAT scores. I want to open them, but I give them to Logan, and he disappears outside to open them by himself.
When I find him, it's by the hotel pool, leaning back in his chair and staring up at the stars like the first night we arrived.