A smile of satisfaction lifted the corners of my mouth as I leaned against Matt’s side. He really was the most romantic boyfriend anyone could ever ask for. And he was mine. I was the luckiest girl alive.
Chapter Seventeen
MY HAND CHECKED to ensure my necklace remained in its rightful place. I’d lost count of how many times I’d reassured myself of its presence. This was the same seat I’d been in yesterday, but I’d been panicking because I’d been without my lucky pendant. Today was going much better. Nothing would go wrong today.
“Haley Vallem,” the nurse announced to the waiting room. This was it. They were calling me back to forever change my life. As long as all the test results were what they expected, then I’d be receiving my first dose of the trial drugs.
I stood up, running my palms down across my jeans in an attempt to rid them of their nervous moisture. I hated this part; I hated feeling out of control. Luckily, Matt seemed to sense my nerves and put his hand comfortingly on my arm. Yes, everything would go fine as long as he stayed with me.
Flanked by my mother, my boyfriend, and Charlie, I left behind all the other hopefuls in the waiting room and followed the nurse to a different room than we’d been led to the day before. This time, the nurse had me sit on the uncomfortably high exam table.
The crinkling sound of the paper underneath me gave away my every movement. To distract from its noise, I began thrumming my heels against the base of the table. I knew this action annoyed my mother, but I was too distracted to care at the moment. Just before the doctor entered the room, my hand rose to touch the edges of my heart pendant once more.
“It’s still there,” Matt assured me.
“Just checking,” I answered, a weak smile playing across my lips.
The door opened, and someone entered the room. The throat clearing sounded directly in front of me, in my blind spot. I had to assume this was my doctor. I wished he’d move to my side so I could actually see something of him. As it was, I could only just glimpse the outline of his feet.
“Hello, Haley. How are you feeling today?”
“Fine.”
“Do you know why you’re here today?”
“Yes. I’m supposed to be starting the drug trial for CNL1 treatment.”
“Very good. I just needed to be sure you were clear on what we are doing today. Are you willing to participate in this study?”
“Yes.”
“Good. You seemed distracted yesterday, so I wanted to make sure you were in the right frame of mind for proper consent.”
“I’m sorry. I lost something very important and only just discovered it was missing when they called me in to see you.” My hand automatically reached up to touch the necklace. “I promise to pay better attention today.”
“Good. Good.” The doctor moved away from me, and I heard the squeaking of the caster-wheels of the exam chair as he rolled it closer to us. The cushion exhaled as the doctor sat down. The noises of paper being rifled through were the only sounds in the room while we waited for the doctor to continue.
“So, Haley. I have a few questions to ask you before I give you any drugs. I see you just recovered from pneumonia. How are you feeling physically? Are you tired?”
“No. It took me a bit to recover, but I feel perfect.”
“Good. So, I see you’ve been tested for seizures in the past. Have you experienced any since these last tests were performed?”
I shook my head.
“Okay. Well, let me tell you about the findings we’ve had with these drugs I’m going to give you today and what you can expect. Does that sound good?”
“Yes.”
“Because Batten is a brain disease, we’ve formulated this drug to counteract some of the major problems stemming from Batten. Some of the changes you might notice will be a better ability to think or reason. You might also find your vision could improve.
“We’ve had better results with younger patients, so it’ll be interesting to see what comes of your issues. You might say that your age is somewhat of an anomaly and we’re anxious to see how these drugs work with your system.”
“I’d be okay with better sight. There’s so much I want to look at,” I offered, grinning as I tried to lighten the mood.
“Yes, I bet you would. Now, on to the darker side of drug trials. I have to give you the list of problems you could encounter just so you’re aware of the risks involved in partaking in this study. When I’m done, then you and your mom will sign a release permitting us to begin. Does that sound fair?”
“Yes. Although I can guess the risks, but go ahead.”
“I’m sure you can. Okay, here goes…” The doctor proceeded to list off so many variations of issues; it would’ve taken up a whole page of fine print in one of those drug ads in a magazine.
In fact, there were so many possible issues that I began to chuckle at how ridiculous this all sounded; not that it was really a laughing matter, but I was already nervous. What can I say?
By the time he got to, ‘up to and including death,’ I almost sighed with relief. Nothing could possibly be said after ‘death,’ so I knew he’d finally gotten to the end. “Wow, that’s some list.”
“Yes, it’s pretty extensive. Now that I’ve detailed everything out to you, Haley, do you understand the risks involved in beginning this drug trial? And, most importantly, do you still want to continue?”
“Yes, and yes. Where do I sign?” I held out my hands, expecting them to give me the paperwork. I heard the doctor slide some papers onto a plastic clipboard and the ting of the metal as it came down to grip the papers solidly. Once in my hand, I brought the papers up close to the side of my face so I could attempt to locate the area for me to sign. Luckily, someone had highlighted the area in pink, and I slowly signed my name in my sloppy, juvenile printing.
I held out the clipboard, and someone took it away. I heard someone else signing the document, presumably my mother. Then the doctor cleared his throat, and I heard the rattling sound of pills in a bottle. The moment I’d been waiting for stood right before me, my hands resumed their sweating, and I rubbed them against the tops of my thighs.
“Haley, I’m going to give you two of these pills right now. I want you to take two pills every twelve hours. We’d like you to stay in the area for the next twenty-four hours in case you have any adverse reactions to the drugs. After that, then you’re free to travel back home.”
“Should I take them with food?” I asked, the slight weight of the pills in my hand a sharp contrast to the weight of their potential results on my life.
“It doesn’t seem to make much difference. Go ahead and take those right now.”
A paper cup of water pressed against the edge of my other hand. Not wanting to delay the inevitable, I popped the pills in my mouth and swigged the water in almost the same motion. Now we just had to wait to see what came of it all.
~~~~~~~~~~~~
By the time we arrived back at the condo, I was feeling the first side effects of the drugs. When I stepped out of the car, my balance seemed off, and I ended up grabbing for Matt to hold me steady. His fingers threaded with mine and I welcomed his touch. I probably leaned heavier on Charlie than I ever had before.
Once we were back in the apartment, I said, “I’m feeling a little tired. I think I’m going to go lie down for a bit.” I didn’t want to mention that I felt like I’d just run a marathon; my mom would have worried and hovered had I admitted that part.
“How did it go?” I heard my dad ask my mom just before I shut the bedroom door. I imagined they would be talking for quite some time while I slept. It was probably better this way; I had no interest in hearing all the details of the doctor’s visit all over again. Once was definitely enough!
~~~~~~~~~~~~
Twenty-four hours and my only reaction had been exhaustion. Hopefully, that would subside in the next few days as my body grew used to the dosage of drugs. I certainly hoped so, because spending all my time in bed was certain
ly not my idea of living.
Our packed bags stood ready for our departure from the amazing condominium. Matt’s aunt had come over to bid us farewell; I could hear her laughing with Matt and my dad over some sports event they all had an interest in. Leave it to Matt to discover some obscure sports fact to lure my dad into a lengthy discussion.
“It was sure nice meeting all of you,” Chrissy announced.
I took that as my cue to get up from the couch where I’d been resting. Immediately the room silenced as if my movement had been so interesting as to arrest all attention. Seconds later, Matt came to my rescue, taking my hand and leading me over to his aunt. I could smell her fancy, floral perfume.
“Thank you for everything,” I said simply.
“You’re so very welcome, Haley. Let’s just hope this gives you everything you’ve ever wanted. Maybe I’ll be seeing you again soon.”
Matt leaned in to say, “Aunt Chrissy is trying to get me to agree to spend Christmas break with her. She’s hoping you’ll come with me.”
I grinned, thinking this sounded like a fun trip. In all my life, I never thought I’d be planning a getaway with my boyfriend. I guess there’s a first for everything. “Sounds like fun,” I announced brightly.
My dad cleared his throat nervously, and added, “We’ll talk about that later, Haley. Right now, we should be heading down to the car. We don’t want to keep Chrissy’s plane waiting forever for us. She’s already gone to enough trouble for us.”
“Oh, Robert, it was nothing. Really. Besides, it got my favorite nephew down here to see me. I’d say we all won on this trip. It was a pleasure meeting both you and Ruth. You’ve raised a very special daughter.” She gave everyone hugs before she declared she had to head out to some business meeting.
~~~~~~~~~~~~
Sitting in the fancy airplane excited me just as much this time as it had the last. I could get used to this kind of luxury and convenience. Not only did we avoid all of the lines and crowds of people, but I also didn’t have to endure the whispers of people commenting on my blindness. Not that it bothered me much anymore, but I know Matt took exception to the rudeness and I wanted to spare him from it all.
An hour into the flight, Matt’s silence finally got to me. I nudged him with my elbow and asked, “What’s got your mind so busy?”
“Nothing.”
“Bull. Spill.” I wasn’t going to let this go.
Matt sighed. “I was just thinking about that laundry-list of side effects the doctor read to us. Doesn’t that scare you? It sure scared me. I almost grabbed your hand and hauled you out of there.”
“To be honest; not really.” I could feel Matt inhaling for a rebuttal. “No, listen. They have to outline every possible contingency, but those things only happened to a minute sample of the test subjects. They have to feel pretty confident about the drug’s effectiveness, or they wouldn’t risk all that research and money with a live trial.”
“I guess,” Matt said, sighing through the two words.
“Besides, what I’m doing is no different than what your brother’s doing to further Batten research.”
“My brother? Jimmy’s dead and buried. What could he possibly be doing?”
“No, your mother told me they donated his body to help with the Batten research.”
“What?!” Matt exclaimed. “No, they didn’t! They wouldn’t have done that to him!”
I tried to reach out to Matt, but he must have jumped clean out of his chair. “I’m sorry, Matt; I thought you knew. Your mom didn’t make it seem like it was a secret.”
“Well, she sure forgot to mention that little detail to me!”
“What’s going on here,” my dad interrupted.
“Nothing!” I said at the same time as Matt.
As if to prove this point, Matt resumed his seat next to me. In a harsh whisper, he said, “Tell me everything you know about this.”
“Matt, think about it for a second. What your family went through might be able to be prevented if they can study what happened to your brother on a molecular level. Don’t let his death be in vain.”
“Listen, Haley; I get what you’re saying on a logical level. I’m just angry that nobody thought it was important to tell me about it before now.”
“I don’t think it was a secret. Besides, I believe your brother would’ve wanted to do it. I know I would.” My thoughts turned inward, and Matt continued to brood over my revelation. I wish I’d kept my mouth shut, but I couldn’t take it back. At least Matt knew the truth now. What he did with it was up to him.
Chapter Eighteen
A SMALL PARTY greeted my arrival at home. I should’ve known my brother and sisters would want to know how things went since none of them could come with us on such short notice. Still, I could feel the drugs zapping my energy even as I stood in the doorway to the living room.
“I’m going to head home, Haley,” Matt whispered into my ear just before he kissed my cheek. Before I could say anything more to him, he squeezed my hand in farewell and left my side, the screen door slamming to indicate his abrupt departure.
I wished we’d had more time to discuss the news about his brother. I hated thinking he left here mad and I certainly didn’t want to trade places with his mother, either. Still, my family expected to hear about my trip, so I let Charlie know I wanted to walk over to the couch where I plunked myself down with a relieved sigh.
Even though I’d slept for most of the flight, I still felt like I could go to bed and stay there for the remainder of the night. I hoped these drugs would begin assimilating faster so I could get my life back; it seemed like such a waste to sleep through everything!
Jackson and JB flanked me on the couch, both of them eager to hear about the private jet ride. Of course, that would be the only part they heard in the whole adventure. Still, I had to agree how amazing the surprise had been, especially since going the private route was so much faster and more convenient than waiting around for commercial flights.
“Hey, did you know Matt wants to become a pilot when he’s done with high school?” I asked my friends.
“No,” replied JB.
“Yeah; I think I remember him saying something about it once. I didn’t think he was serious, though. That’s cool. Maybe he can take us up. He could learn how to do all those aerobatic tricks, and we could do loops over our houses.”
“Ugh, I think I’ll pass on that one,” I said, my stomach flip-flopping with just the thought of it. I don’t know what came over Jackson sometimes; he had the strangest sense of adventure. Maybe his unpredictability and my stability are what kept us drawn together.
The room went silent, and I frowned as I tried to figure out why. Suddenly, everyone began singing the birthday song, and I heard Rose’s voice coming to a stop right in front of me. I could tell she held a birthday cake because I could feel the heat of the candles and smell the sweetness of the frosting.
Dutifully, I drew in a deep breath and blew out all the candles. My family began laughing, and Rose started coughing. I guess I must’ve blown the smoke right into her face; my bad. “Sorry, sis,” I said, unable to prevent myself from chuckling at her expense.
“Totally my fault for being in the line of fire…or smoke, in this case, I guess,” Rose sputtered through the smoke still hovering in front of her face.
After consuming copious amounts of cake and ice cream in the dining room, we returned to the living room for me to open presents. With all of the commotion on my actual birthday, I didn’t really expect a celebration this year. Don’t get me wrong. I loved it; except it seemed wrong to be celebrating without Matt beside me. I knew he was at home arguing with his parents over the news I dropped on him.
I tore open the packages placed in my lap and let my fingers try to figure out what everything was. Hunter had given me a gift card to buy audiobooks to add to my collection. He knew how I loved getting lost in all those great stories.
Jackson and JB had each made me friendship brace
lets to match the ones they wore. I loved being part of our tight-knit group. This simple jewelry let everyone know we were a part of something together. “Plus, I want to create a special video featuring you playing your cello,” Jackson announced.
I realized he hadn’t been privy to Matt’s surprise with my performance with the symphony. No way would I ruin his enthusiastic offer with what had already happened. Besides, Jackson always made filming the productions a fun event. If nothing else, we would have a blast for an afternoon.
Rose had found some plush pillows for my bed. She had impeccable timing since it seemed I’d be spending more time sleeping these days. I loved the different textures on them, even if I couldn’t really tell what they looked like.
Julia kneeled in front of me as she placed her large, rectangular package on my lap. “I knew this was for you the moment I found it. I hope you like it.”
No matter what she bought me, I knew I’d love it because she had thought of me. I ripped open the paper and pulled up the lid. After sifting through several sheets of tissue paper, my fingers discovered a silky material. “What is it?”
“It’s a formal dress. I thought you might be interested in going to a dance or two at school this year. Maybe with a certain someone who shall remain nameless,” she teased.
“Okay, I get the idea already. Thank you, Julia. It feels amazing already. What color is it?”
“As if you’d have to ask. Of course, it’s your favorite shade of lavender. Slightly more sophisticated than the pink you used to be infatuated with.”
I put the package off to my side as I folded my arms around my sister’s neck and hugged her. I whispered into her ear, “Now I just have to convince Matt to ask me to the dance.”
“I don’t see that as being a problem. You may not have, but we’ve all seen the way he looks at you. He’s clearly smitten,” Julia whispered in reply before she pulled back and stepped away. “Happy birthday, Haley.”
The Rift In Our Reality: A Sweet Young Adult Romance Page 12
