by P.D. Workman
Chapter Nine
IT WAS EASIER TO forget about Renata’s crazy conspiracy theories once Gabriel was out of the hospital and settling into the new foster home. Everything was so different from the two places that he had grown up—home with Keisha and at the hospital—that Gabriel was constantly exhausted by the mental stress. He was doing better getting around the house without help. He learned how far he could go at one time, and established resting places in each room, or on both sides of each room.
He pushed all of Renata’s dire predictions and theories out of his mind and just tried to settle into the new life. Heather promised that she was working on getting him visitations with his mother, and Gabriel believed her. School was out of the question to begin with. Heather said that once he was onto the protocol at the mito clinic, he should have enough energy to attend school. Until then, she arranged for a school outreach program that brought tutors to the house twice a week, and he had reading and assignments to do in between.
“I couldn’t homeschool myself,” Heather declared. “Especially not advanced math. That would just kill me. I was never very good at school and have hardly cracked a book since.”
She was a nice lady and seemed bright, so Gabriel was surprised to hear such a thing from her. Keisha had always been so vocal about lifelong learning and upgrading your skills, and insisted that Gabriel spend as much time as his health would allow on schoolwork and studies. She would stay up long after he was in bed, studying his textbooks so that she would be able to teach him or help him as he advanced through each subject. What she didn’t know, she learned, and while sometimes Gabriel caught her mistakes and pointed them out, she was usually one step ahead of him.
“Math isn’t bad,” he told Heather. “I like it better than reading.”
“Well, at least reading is something I do every day. I don’t have anything to do with math if I can help it.”
Gabriel shook his head and focused back on his reading assignment. He didn’t have to like it, Keisha always said, he just had to buckle down and do it.
Heather answered the phone and was chattering away as she moved from room to room with the phone tucked into her shoulder and a laundry basket on her hip, picking up discarded clothing and toys that needed to go back to the children’s rooms. Collin and the little kids were at school, so it was just Heather and Gabriel and baby Alex at home. Alex was sleeping or talking to herself in the crib. Gabriel immersed himself in his lesson.
“That was the clinic,” Heather announced, coming back into the room. “We’ve got an appointment for you for Wednesday afternoon.”
Gabriel looked up from his work and focused on her for a minute, replaying what she had just said in his mind to process it. He nodded.
“Okay.”
“It will take us a couple of hours to drive in, so we’ll need to leave right after lunch. Bring your books with you; you may as well get your work done in the car or in the waiting room instead of wasting your time and being bored.”
“Okay.”
Heather bent down to get Gabriel’s attention and look him in the eye. She smiled widely. “Aren’t you excited? These new drugs that they’re using at the clinic are really making a difference. If I was you, I’d be super excited about having the chance to try them out.”
Gabriel forced a smile. “Yeah. That would be good,” he agreed.
He wasn’t going to set his hopes on the drugs making a big difference in his case. They wouldn’t work for everybody. And if it was a proper drug trial, then not everybody would be getting the new drug. Some people had to be in the control group and get a placebo. And with his luck, he’d get a placebo. And then not even get the placebo effect.
When they called it a ‘clinic,’ Gabriel had pictured the Lantern Clinic as a little, dark, research facility in the back room of some mall or professional building. Like the walk-in clinics in his neighborhood or the cheap vet clinic farther down the block. So he was stunned to see the Lantern Clinic when they pulled into the parking lot. It was a big, modern building with lots of glass, an atrium in the front with a working waterfall, a juice bar, coffee shop, and what looked like a spa for middle-aged women. Everything was sparkling new and impressive.
“Whoa,” Gabriel said, looking around the lobby. “This is… just… wow!”
Heather nodded, laughing. “Not quite what you expected, hey? This place always blows me away.”
“My mom could never have afforded to bring me here,” Gabriel realized. He sat on a bench to get his energy back and Heather waited patiently.
“They pay for participation in the trials. You don’t have to pay them; it’s the other way around. They pay you to come here and be pampered like this.”
Gabriel remembered the millions of dollars that Renata claimed the clinic got for arranging for patients to participate in the trials. After seeing the Lantern Clinic, he could see where she had gotten the idea. They certainly weren’t hiding their wealth.
“How many kids are in the trials?”
“Somewhere around forty new kids per year. I think that’s the number that was in the brochure. And they do long-term follow-up too; I’m not sure how long they monitor the patients. But forty active at any one time.”
“I didn’t think mito was that common.”
“There’s over a million people just in the valley. Mito occurs in something like one in eight thousand…” Heather trailed off, shrugging. “Well, it seems like there’d be enough.”
Gabriel tried to calculate it in his head. “A hundred twenty-five,” he said, frowning, “in every million.”
“Something like that.”
“Forty new per year?” Gabriel repeated. “Even if you took the population of the whole state, you’d run out in a few years. And it’s only kids, right? How can they find enough kids for the trials?”
“I never stopped to think about it. But they come from all over, even out of state. As long as you can make it back here about once a month, it doesn’t matter how far away you live…”
Gabriel shook his head. He got to his feet again, and they walked to the elevator, where there was another bench to rest on while they waited for the glass-walled elevator to make its leisurely way down to the atrium level to pick them up. The elevator took them up to the fifth floor. Gabriel looked at the list of doctors and departments on the wall.
“This place is huge!”
“Yes, it is. This way.”
Heather led him to the waiting room for Dr. De Klerk. It wasn’t like the little waiting rooms at the doctor’s offices that he usually went to, with the chairs crammed right up against each other and mismatched children’s toys in a jumble on the floor. It was open and spacious, with white moldings around the ceiling, comfy padded chairs, a series of children’s playhouses with brightly painted walls, dark green plants with broad leaves, and another waterfall, a smaller one, that provided a tranquil background for the waiting patients and parents. Heather motioned to the chairs, and Gabriel sat down. She went to the receptionist desk to check Gabriel in. The receptionist pulled out a file that had already been made up.
“It looks like DFS, Dr. Seymour, and the hospital have provided us with everything that we need.” The pretty receptionist looked across the room at Gabriel. “I think that we can probably handle Gabriel. You’re welcome to go down and make use of the spa while we’re working him up.”
She handed Heather some kind of coupon. Heather looked down at it. She went over to Gabriel, looking uncertain. “I’ll stay with you if you like, Gabriel…”
“No, you can go,” he encouraged. “I’ll be fine.”
Heather looked down at baby Alex in the carrier. “Well then, come along Alex, it looks like we get a day at the spa.” She smiled at Gabriel. “They’ve got my number, so you just have them call if you need anything. I’ll be off getting my nails done.”
They weighed and measured Gabriel, took his heart rate, blood pressure, blood sugar, and had him walk on a treadmill, which didn’t wo
rk out too well. They ran every other test that Gabriel could think of, and some that he’d never even heard of. It was exhausting, but the nurses whisked him from one place to another in a wheelchair. They at least didn’t act like the psych nurses had, like he was pretending or playing for attention. They just took it in stride.
After a few hours, Gabriel was delivered in his wheelchair to Dr. De Klerk’s office. It was a luxurious dark-wood room, with shelves and shelves of hard-bound books. There was a big gold clock on the desk, with a glass base that allowed him to see all the complex clockworks inside. Gabriel stared at it, mesmerized.
Dr. De Klerk had silver hair, a narrow face, and a mouth that pointed downward with deep wrinkle lines. He was tall. He leaned back in his big leather chair looking through wire-frame glasses set low on his nose at the file that the nurse had handed to him. Dr. De Klerk didn’t look like the evil super-villain that Renata had described. More like somebody’s grumpy grandpa or the next-door neighbor who didn’t like kids playing in the yard. Gabriel watched the whirling clock parts, waiting.
Eventually, Dr. De Klerk spoke. “Well, Mr. Tate, how would you like to feel better?”
Gabriel shrugged without looking at him.
“You don’t want to?” De Klerk pressed.
“I don’t know if anything will help.”
“We have some very promising medical trials. We’ve seen some astounding results.”
Gabriel didn’t want to think about that. He didn’t want to get his hopes up. He didn’t want someone else’s normal; just his own. He considered his answer carefully. This might be his only opportunity to drive his own fate.
“What if I promise to participate in your trials if you’ll let me go home to my mom?”
De Klerk took off his reading glasses and looked at Gabriel. “That’s an interesting proposition, Mr. Tate. But here’s the thing. You can’t make a contract with me. You’re not of age. I don’t need your agreement to participate in the program. I only need your guardian’s and I’ve got that.”
Gabriel swallowed. “If I went back to my mom, I’d be closer to you. And I wouldn’t cause any trouble; I’d do everything you said.”
“I am not the person who makes decisions on your custody. But your mother has unfortunately already proven that she can’t follow the protocol that she is given. Her decision to tweak it and make unsupported changes has put your health in serious jeopardy. I could not, in good conscience, recommend her as your caregiver.”
“I was getting better with her changes. I was putting on weight and feeling better. I had more energy…”
“Having more energy was an illusion. A placebo effect. Your tests tell a completely different story.”
Gabriel’s voice rose in anger. “I want to go back to my mom! It was not a placebo; I was doing lots better at home. She doesn’t have Munchhausen by Proxy. My sickness isn’t imagined, and neither were the improvements! You don’t know what you’re talking about!”
Dr. De Klerk pushed Gabriel’s file away from him slightly. “Sounds like your mother isn’t the only one who thinks she is more qualified than the doctors. Tell me, how long did you go to medical school?”
It was a rhetorical question and Gabriel had no answer or rebuttal.
“I have dedicated my life to helping kids like you, Gabriel. I know more about mito than any person on the planet. I have a more effective treatment than is offered anywhere else. Do you know I have a boy who is flown in from Germany every two weeks? Because his family understands that I have the only effective treatment in the world! Your internet research doesn’t even begin to touch on what I know.”
Gabriel watched the inner workings of the clock. Dr. De Klerk might have a huge ego, but what he said was compelling. Where else would Gabriel be able to get such expert care? The dirty little clinics and doctors’ offices that he was used to couldn’t compare to the huge, glassed-in Lantern Clinic. Most of the doctors he had dealt with over the years could barely even remember what a mitochondrion was, and Keisha had had to educate herself in order to be able to explain it to the doctors and get Gabriel adequate care. There was no comparison to De Klerk’s facility and his knowledge and training.
“I’m sure you want to feel better,” De Klerk said in a quieter voice. “All the kids who come through here are desperate to feel better. To be able to walk and run like typical kids. To be able to go to school and study and play like their friends. I can help you with that. And there’s no cost to your family. We will give you everything you need to be successful.”
Gabriel nodded.
“Good. I want you to sign this form.” De Klerk opened a drawer and drew out a single-page form. He slid it across the table and put a fat, shiny pen on top of it.
“I thought you said I can’t sign a contract,” Gabriel reminded him.
“This isn’t legally binding. This is a personal agreement, between you and me, that you will follow your treatment plan. I realize that it would not hold up in court. But you will be morally bound. You know that a man keeps his promises. And no matter what happens, you will know that you signed this. That you made a promise to me.”
Gabriel looked down at the paper entitled ‘Patient’s Bill of Rights.’ It didn’t seem to be so much what his rights as a patient were, but the patient promising to follow the protocol and do what he was told. He chewed on the inside of his cheek, frowning. Dr. De Klerk sat there waiting silently.
Gabriel wondered where Heather was. She said that he could call her. Maybe she was even back in the waiting room now, expecting him to be done soon. If Keisha had seen that ‘Bill of Rights,’ she would have been furious. There was no way that she would have signed it or allowed him to sign it. With his stomach knotted with anxiety, Gabriel pushed it back across the desk, shaking his head.
Dr. De Klerk didn’t react. Gabriel expected him to explode. Or if he didn’t explode, to get purple with rage. But he just looked across the desk at Gabriel, face expressionless. “So, I see where we stand,” he said, picking up the paper and putting it back in the desk drawer. He pulled out another paper, this one printed on green paper. He put it in front of Gabriel. “Here is the protocol that you will be following for the next two weeks. You will be taking these three medications,” he pointed with his pen to three lines of letters and numbers, “in addition to the meds that you are on now. Two tablets of each, three times a day. If you find that they are making you nauseated, don’t take them on an empty stomach. You will need to keep a log.” He pulled a yellow paper from his drawer. There was a ruled table with columns for date, time of day, energy level, symptoms, and so on. “On rising, mid-afternoon, and bedtime every day. Mrs. Foegel can call the inquiry line if she has any concerns.”
Gabriel nodded.
“I’m very excited about this treatment program, Gabriel, and I hope you are too. I understand that you’ve been through a lot of disappointments, a lot of meds and treatments that just haven’t worked for you. So you’re skeptical. But I think the next time I see you; you’ll have a different attitude.”
“I hope so.”
Dr. De Klerk pushed a button on his desk. Hardly a second passed, and his door was opened by a nurse. Gabriel picked up the green and yellow papers.
“We are done for the day. You can take Mr. Tate back out to Mrs. Foegel,” De Klerk said.
The nurse wheeled Gabriel back out of the opulent office. They went through a couple of corridors to reach the glass elevator.
“Long day?” the nurse asked, as Gabriel smothered a yawn.
He nodded. “Yeah, and a couple more hours to get home.”
“Maybe you can sleep in the car.”
“I probably will.”
They made their way back to the waiting room where Gabriel had separated from Heather. She was back ahead of him, flipping through a women’s magazine. She looked cheerful and refreshed, her hair and nails done. Gabriel wished that Keisha had brought him to the mito clinic. He would have liked to see her pampered at the end of
a long day instead of tired out and irritable. It wasn’t easy for her, caring for Gabriel every day, teaching him, dragging him around to doctor’s appointments or emergency rooms, doing hours of research on things that she could try to help him. Gabriel tended to go to sleep pretty early in the evening, but she usually looked tired and worn by that time, and he knew that she stayed up hours after he was asleep, researching and cleaning. He knew that she stayed up late, because often when he would awaken with leg cramps or sick, she hadn’t yet been to bed, even in the small hours of the morning.
“All ready?” Heather asked with a smile.
“Yeah.” Gabriel stood up from the wheelchair and waited for a moment to get his land legs, as Keisha was fond of saying. He stretched his neck and blinked, trying to push away the fatigue. “Do we need to stop somewhere for prescriptions?”
“I’ve already got everything.” She held up a small bag with the clinic’s logo on it. “Let’s go.”
They made their way back to the elevator and back down to the lobby. Mrs. Foegel looked at her watch in the elevator. “It’s getting to be time for you to eat. Shall we stop at McDonalds on the way out of town?”
Gabriel’s appetite was not what it should be, since leaving Keisha. The thought of burgers or chicken nuggets made him queasy. “Why don’t we go here?” He leaned on the glass wall for support and pointed at the juice bar as they descended. “Do they have anything to eat?”
“Well, we could go see what they have. It’s on our way and might save some time.”
In the lobby, Gabriel sat on the bench outside the elevator. “I’ll just wait here while you take a look,” he suggested.
She looked at him for a minute, then nodded. “I’m going to leave the carrier here.” She put the occupied baby carrier on the floor beside Gabriel. “What do you want?”
Gabriel shrugged. “Just a sandwich or pasta or something.”
While she went over to the juice bar, Gabriel leaned forward with his elbows on his knees, looking at baby Alex. She babbled and moved around, but he wasn’t sure how much she could see through those big, thick lenses. He stuck a finger into her hand, and she grasped it tightly.
Heather was a few minutes and came back with a wrap and some sort of chocolate square. “I’m not sure what it will be like,” she said. “It’s raw food cuisine, so I don’t even know what everything is made of. But it looked all right. If you don’t like it, we’ll stop somewhere else on the way home.”
“Sure.” Gabriel took the food. Heather took the baby, and they headed back to the car. Gabriel unwrapped his food while Heather got Alex settled in the back seat, and then they were on their way.
Heather looked over at Gabriel after he’d taken a couple of bites of the wrap. “Well, how is it?”
“A bit dry. But it’s okay.”
“Good. How did things go with Dr. De Klerk? Did he explain everything to you?”
Gabriel looked away from her, pretending to be interested in something outside the window. “Yeah. He explained everything.”
Gabriel woke up with his face against the car window and a crick in his neck. He opened his eyes and straightened up, wiping a trail of drool from the side of his face. He used his sleeve to mop it all up. The back car door slammed, and he saw Heather taking the baby carrier up the front walk to the house.
His wrap was still in his lap, only half-eaten and drying out even more. It didn’t look appetizing at all. And the chocolate square was on the floor somewhere. He moved his feet looking for it, trying not to step on it and make a big mess.
After Heather had put Alex in the house, she came back to the car. She opened Gabriel’s door and smiled. “Have a nice nap?”
Gabriel cleared his throat. “Yeah, sure,” he agreed, rubbing his eyes.
She offered him a hand out of the car and Gabriel accepted. He started up the sidewalk with her at his side. Not touching, just close by to help him if he needed it. About halfway up the walk, he needed to rub his legs and then to steady himself on her shoulder as he pressed onward. By the time they got to the house, he was leaning on her pretty heavily, but she didn’t complain. At least he didn’t have to crawl over the last step and into the house. He leaned against the house and managed to get in on his own two feet.
Heather was looking at her watch as he settled into the couch to rest up again. The baby was starting to fuss in the other room. “They said to give these to you around seven, so I guess it’s time for your first dose. Do you want some milk—some juice?”
“Just water.”
“You need to get more calories in you if we’re going to get your energy up. Those little mitochondria need to be fed!”
Gabriel rolled his eyes. “Okay. Juice.”
“Okay. Wait just a minute. Here, take this.” She handed him the bag of pills. While she was getting the juice, Gabriel took the three bottles out of the bag. The bottles were marked with the letters and numbers that were on the protocol sheet. Two of each, he remembered. He expected all of the pills to be white and nondescript like generic painkillers, but one bottle held pink pills, one blue, and one yellow. A nice balanced approach. Gabriel took out two of each and was ready when Heather returned with the juice. He downed them all in one handful, chased with a few gulps of the juice.
“Okay? Need any more?” Heather questioned when he handed the cup back to her.
“No. I’m good.”
They both looked at each other for a minute. Gabriel couldn’t help feeling a little stir of excitement over having taken the first dose of the pills. Dr. De Klerk hadn’t given him any indication of how long it might take before he started noticing any changes. A few hours? A few days? A few weeks? It might be months before the pills reached full efficacy. No one had bothered to say.
Heather raised her eyebrows and gave a crooked little grin. “Now, I guess we wait!” She put a light, slim hand on his shoulder. “I hope it helps.”
“Yeah. Me too.”
The answer was, not even an hour. In about twenty minutes, Gabriel was way past ‘possible nausea’ and hanging over the toilet regurgitating the raw wrap from the juice bar. He was thankful that he hadn’t had a burger and fries, although the bits would probably have been softer and not hurt as much if they got caught in his nasal passages.
“The inserts say you should take them with food if they cause nausea,” Matt said, standing in the bathroom doorway reading the information from the clinic.
“This is more than nausea!” Gabriel pointed out.
“Well… yes… How are you holding out there, bud?”
Gabriel groaned, resting his head on the toilet seat. His body felt like a wet rag. Damp, and limp, and cold.
“Sorry… if you think you’re done, I’ll help you back to your room. You can have a bucket, in case it starts again.”
Gabriel considered. There was nothing left in his stomach, so he hoped that the retching would stop, and he wouldn’t be dry heaving and throwing up mucousy strings of acidic yellow bile for the rest of the night. It would feel better if he could lie down on his bed instead of sitting on the cold tile. And his head was steadying a little.
“Yeah. I think so.”
“Okay.” Matt put the papers on a knick-knack table in the hallway and returned to the bathroom. He gave Gabriel a hand up. Gabriel leaned heavily on his arm, and Matt walked him slowly to the bed. Gabriel stretched out with a sigh.
“You’ll get a bucket?” he reminded.
“You bet. Be right back.”
Gabriel closed his eyes and waited for sleep to come. Matt was shaking him awake what seemed like only seconds later. Gabriel opened his eyes, blinking and trying to figure out why Matt would wake him up. Matt was looking at his face intently.
“You’d better sit up for a few minutes,” he said. “Your nose is bleeding.”
Gabriel pushed himself up to sitting and held the tissue that Matt handed him up to his face. It came away stained with blood.
“Pinch and hold tight. It should
stop in a couple of minutes. You probably just ruptured a membrane throwing up.”
Gabriel held the tissue pinched over his nose, leaning on his other hand for support. He really wanted just to lie down and go back to sleep. Heather stood in the door of the bedroom, watching with worried eyes.
“Oh, poor Gabriel. I hope you feel better soon. If you’re going to sleep now, we’d better fill out this log before you do.”
“Okay.”
She read the questions to him and transcribed his answers. “Side effects vomiting and nosebleed—anything else?”
“Nuh.”
“Okay. I’ll give the clinic a call in the morning before you take another dose. See if there’s something we can do to keep you from getting sick. Or if there’s one of the pills that you should stop taking.”
Gabriel nodded. He pulled the tissue away from his nose and waited to see if it was going to drip more. He could feel a clot in his nose like a giant booger and wanted to blow it out, but didn’t dare in case it would start bleeding again. He dabbed at his nose gently. “Think id stopped.”
Matt scrutinized his face and nodded. “Looks like it. Maybe lay on your side so that it doesn’t drain down your throat if there is any more bleeding. We’ll check on you again before going to bed.”
Gabriel lowered himself back to the bed and lay on his side.
Matt patted him on the shoulder. “Bucket’s beside you if you need it. Holler if there’s anything else.”
Gabriel awoke when Collin went to bed. The light went on and Collin swore. “I keep forgetting about you.” He turned on the lamp and turned off the overhead light. He began to undress for bed. “Sheesh, you stink. You oughtta take a shower or brush your teeth or something. Phew. Uggh.”
“Sorry,” Gabriel murmured. He didn’t get up to go clean himself up. If he had to put up with Collin’s football stink, Collin could put up with his sickness. Gabriel didn’t have the energy to wash up.
Collin kicked the bed, making Gabriel jump wildly. “I’m talking to you,” Collin growled. “Are you listening?”
“I said sorry. I’m sick.”
Collin kicked the bed again. Gabriel put his arm up over his face to protect himself. But Collin wasn’t hitting him, just the bed. Collin grunted and went back to undressing. He climbed into bed and turned off the lamp. Gabriel lay in the dark, his heart still thumping hard in his chest.