by Ward, Vivian
“What time do you need to go to the doctor’s office?” Lorraine asked as she looked at her watch.
“They said to come in around 4:30.”
“Well, you better get a move on. It’s a quarter till four now.”
I jumped off the couch, grabbed my purse off the coat rack and headed out the door. “Will you check on her in a bit and see if she wants to eat?”
Lorraine nodded her head and bid her goodbye. After my car was out of sight, Lorraine headed into the bedroom to check on Nevaeh.
Chapter Seven
I anxiously sat in the waiting room of the doctor’s office. I found myself twirling a loose string at the bottom of my shirt. Are they ever going to call me back there? While I waited, I thought of all the possible outcomes and how they might affect me and Nevaeh.
Lorraine and Tyrone are great friends. They both loved Nevaeh as if she was their own and would help with anything they might need. Oh, why did this happen to my baby? What did she—or I—ever do to deserve something like this. It’s never good when the doctor calls you to come in for lab results—is it? Indeed, if it were something minor, they would’ve just said so over the phone. My stomach began churning as I played out different scenarios in my head.
The doctor’s office appeared busy. There was no telling how long I would sit and wait. I glanced down at my watch; it was 10 minutes past the appointment time.
“Ms. Harris?” a voice called.
“Yes,” I stood up and followed the woman into a tiny room.
“You can take a seat in here and Dr. Herber will be with you shortly. He’s finishing up with a patient right now and then he’ll grab Nevaeh’s chart to discuss her testing with you.”
I looked around the brightly decorated room and noticed how incredibly yellow the walls were. White and orange ducks painted a scene on the banana yellow color. Baby ducklings were following their mother duckling as they walked along a trail. I pictured Nevaeh as one of the baby ducks following the mom. For the first time in a long time, I cracked a half-hearted smile as I thought about how much my little girl looked up to me.
I was glad it was summer and Nevaeh was out of school. If she had gotten sick during the school year, she would’ve already missed a couple of weeks. It made me realize that she might miss school during the year, depending on the news I was about to receive. I envisioned going to school, meeting with all of Nevaeh’s teachers and gathering her homework. The two of us would work tediously on her lessons to ensure she wouldn’t fall behind her peers. It would be so time-consuming. How would I work then?
Suddenly, I was pulled out of her thoughts when Dr. Herber entered the room. He was a small man, most likely working a few years past his retirement age. His thinning white hair and wrinkled skin gave him away. He loved children; his demeanor was always patient and kind.
“Ms. Harris?” Dr. Herber extended his hand.
“Hi, Dr. Herber.” I reached out to return the handshake. “Janice called and said you needed to go over Nevaeh’s labs with me.” My heart began to race again.
“Yes, that’s right.” He began to leaf through her chart until he found the blood test results. “Here we go.” He smiled at me, “I thought I’d misplaced her test results.”
He pulled up a stool and sat in front of me, using his lap as a makeshift table. “According to her lab work, it appears her white blood cell count is elevated as well as her CRP, or C-reactive protein. This tells us that inflammation is present. The rest of her labs checked out fine, indicating there is no virus, bacteria or fungi infection present within the blood.”
“That’s good, right?”
“Well so far, yes, but we did some additional testing. Now, I noticed in her patient history you marked a lot of ‘no’s’ regarding the family history section. With the symptoms Nevaeh’s presenting and based on these lab results, I requested additional blood testing for genetic markers which might indicate other possibilities. She tested positive for HLA-B27; it’s a genetic marker that indicates juvenile ankylosing spondylitis.”
“I don’t understand? What does that mean?” I was frightened at the words, although I had no clue as to what they meant, but it sounded terrifying.
“Ankylosing spondylitis is a condition that affects children by presenting signs and symptoms of arthritis. Since Nevaeh tested negative for any pathogenic organisms, it ruled out various types of infections. The only symptoms that seemed to fit were those of arthritis; mainly due to her chief complaint of swollen, stiff knees, ankles, toes, fingers, and back pain. Typically, those are all common ailments of those who have arthritis, which prompted me to request a variety of labs that would indicate arthritic diseases.”
“I still don’t understand. What’s causing the fever? I thought a temperature meant your body was fighting some sort of infection.”
“Not always. Fever can present during a sudden onset of symptoms, including those when the body’s autoimmune system is on the defense. It’s her body’s way of fighting itself. With the highly elevated levels of white blood cells and CRP, it makes perfect sense.”
“How do we fix it and why is she so weak and tired? Does arthritis cause that?”
“Ankylosing spondylitis, or AS, isn’t just arthritis. It can affect other organ systems such as her bowels, skin and eyes. Her lethargy and weakness are occurring because her body’s fighting the disease. It's a hell of a battle for anyone to deal with, especially a little girl as small as her.”
“What do we do now?”
“Now, you’ve been giving her ibuprofen, correct?” he asked, looking through the chart.
“Yes. I’ve been giving it to her as directed on the label, according to her weight and age.”
“Good, the ibuprofen will help reduce the inflammation and ease the pain she’s experiencing, but due to the progressiveness it has taken on Nevaeh, I think we need to ensure she’s physically active. Physical activity will help keep her joints mobile and decrease the stiffening.”
“But she’s been so tired and weak that she doesn’t want to get out of bed. I’ve been carrying her around the house because she doesn’t have the strength or energy to go about the day.”
“Stop, make her get up and walk; it’s good for her. You’re only helping the condition worsen its effects on her. I recommend physical therapy. Another thing you might want to try is hot and cold packs. This will also help ease the inflammation by relaxing the muscles and reducing joint pain.”
“So your answer is to force her to exercise, feed her a strong diet of ibuprofen and give her hot/cold packs?”
“Based on what you’ve told me; it seems her symptoms have become progressively worse since she came in last week. I’d like to prescribe a prescription-strength nonsteroidal anti-inflammatory drug, or NSAID, and a biologic DMARD.”
“A what?” I asked. All of these words were beginning to make my head spin. How in the hell was I supposed to relay this information to everyone else? I wouldn’t be able to remember how to pronounce everything.
“DMARD stands for disease modifying anti-rheumatic drug. The biologic DMARDs contain a TNF-alpha factor which helps treat people with AS. Basically, it’s used to help slow, and sometimes halt, the progression of symptoms associated with the disease.” He began taking out his prescription pad. “She’ll take this once per week, but I must warn you it may take weeks or months until you see some improvement.”
“Weeks or months!?” I was outraged.
“Yes, it may take that long. Of course, she may begin to see relief sooner and there may be some complications with taking this type of drug. I’m going to prescribe methotrexate. Side effects can include a sore mouth and upset stomach. It’s critical if she begins to experience stomach or bowel problems, you report them immediately.”
“Why? What would that mean?”
“She is at risk of developing Crohn’s disease, and we would want to treat it right away. Another thing I want you to watch for is psoriasis, or dry, rough patches of skin. It
usually appears on the elbows, shins and other parts of the body.”
“What if these medications don’t work?”
“If the NSAID and DMARD prescriptions don’t work, we’ll begin a more aggressive treatment, but I’d like to hold off on that until we see how she responds to these first.”
He tore the prescription from the tablet and handed it to me. “I’ll ask Janice print out some information about the disease and symptoms so you have a better understanding of it. The pharmacy will go over the medications when you order them and they’ll be able to address any questions or concerns. In the meantime, I’m also going to recommend you to a pediatric rheumatologist. His name is Dr. Robert Newton.”
“Is she going to be okay?”
“The disease is completely manageable as long as you’re treating it. The most important thing is to get her in with Dr. Newton so he can do additional testing and continue her treatment plan.”
I left the doctor’s office speechless. When I reached the car, I began frantically reading the literature I’d received at the office visit, trying to make sense of everything. Motivated to become educated about Nevaeh’s condition, I studied the information before me. It was all too much for me to take in.
I called Lorraine on my way home and attempted to articulate everything the doctor had told me about Nevaeh’s disease.
“I don’t understand. So it’s genetic? Has anyone in your family ever had it?” Lorraine asked.
“No. I’ve never even heard of anything like this.”
“You know what that means? Troy must’ve been a carrier for the gene. I wonder if he even knows it.”
“That’s a good point! I never thought about Troy, but it’s easy to do when you’re the only parent raising a child; sometimes you forget about the loser who gave her to you.”
“I know I’d like to forget about him. I’m so glad you don’t deal with him anymore. Could you imagine dealing with him and trying to take care of Nevaeh right now? I’m pretty sure you’d end up in a ward somewhere.”
“For sure. I’m on the service road now and I should be home in a few minutes. When I get there, I don’t want us to talk about Nevaeh’s condition in front of her. I’ll explain it to her later, but I don’t want her to hear any negativity.”
“Mum’s the word.”
When I came home, Nevaeh was sitting in my bed, coloring a picture.
“Look, Momma,” she said as she held up the picture. “I colored this just for you.”
“Oh, thank you!” I said as I took the picture from her. “It’s beautiful.”
“What did the doctor say, momma?”
Lorraine and I sat on the bed with her. “I talked to him and he gave me a good explanation of your symptoms. You have inflammation in your body, which is what’s causing all the swelling. Dr. Herber said you need to see a specialist, but in the meantime, he prescribed you some medicine that will help you feel better.”
“I don’t have to take a shot, do I?”
“Oh no, honey. It’s nothing like that.”
“Yeah, your mom’s right. You just need to take some medicine that will make you feel better.”
“Oh good. More medicine,” Nevaeh said as she rolled her eyes.
“Nevaeh, don’t think of it as more medicine. You only need to take a particular medicine once a week and another one when you need it for swelling.”
“Momma, what’s a specialist?”
“It’s a doctor who only works with certain people.”
“What do I have?”
“I don’t remember how it’s pronounced, but it’s called ‘A-S’ for short. Ankle-something is all I know,” I laughed, trying to make light of the long name I couldn’t remember.
“Oh. Will the kids at school know that I have AS when I go back?”
“No. They won’t know anything. You’ll take your medicine at home, okay?”
Nevaeh nodded. “Lorraine and I will be right back. Why don’t you color me another beautiful picture? Okay?”
“Ok, Momma.”
I motioned for Lorraine to follow me into the living room. “I need to get these prescriptions filled, can you keep an eye on her while I run to the pharmacy?”
“Sure, no problem. Do you want me to get dinner started for you? Did you set anything out?”
“Oh, crap! No, I completely forgot this morning. I’ll pick something up. Do you want to eat with us?”
“No, it’s okay. Tyrone’s grilling chicken breasts for us tonight. I’m sure he’ll start dinner as soon as I get home.”
“Okay, I won’t be long. See you in a bit.”
I handed the prescriptions to the pharmacist who looked them over.
“I’m sorry. We can fill her prescription strength NSAID, but we don’t fill DMARDs.”
“You don’t fill them? Where am I supposed to go? Who does them?” I questioned, trying to figure things out.
“Well, most patients who take them have to do mail order pharmacies; most insurance companies require it.”
“Mail order? You mean my daughter has to wait for her prescription to come in the mail?”
“Again, I’m sorry. That’s just the way it is. If you’d like, we can fill this portion of the prescription and fax a copy of this over to the mail order company, and they can fill the DMARD portion.”
I was at least glad the pharmacist was willing to help me. “Okay, that’d be great. Do you know how long until they typically send it out?”
“I don’t know.”
I nodded. “Okay. How long for this one to be ready?”
“Oh, say about 30 minutes. We can page you when it’s ready if you’re going to wait for it.”
“Yes, please. Page me when it’s ready.”
After the prescription had been filled, I inquired as to which mail order pharmacy they faxed the DMARD drug to.
“We ran your insurance, and it appears MaxCare is covered under your insurance, so we sent it there. They should contact you soon to obtain all of your information.”
“Thank you,” I said as I paid for my daughter’s medicine and headed home.
Along the way, I stopped to pick up dinner for us. My thoughts raced as I replayed what the pharmacist told me. Why don’t doctors tell you these things so you’re not shocked at the pharmacy? It would have been nice to have a clue as to what was going on before I got there. At least Nevaeh didn’t seem too upset about her condition; the most she was worried about is whether the kids at school would know or not. Never mind the fact it could progress into something much worse, but I didn’t tell her about that. I decided to call my mom and brothers to have a get-together that weekend. It would give me the chance to explain what had been going on with Nevaeh as well as tell them about Dale.
Later that night, Dale called to check on Nevaeh after she had gone to sleep. I was so relieved to hear his voice. I filled him in on tidbits of information I’d read from the literature. He agreed it was scary that a disease could leave a child crippled as it progressed. We talked on the phone until wee hours in the morning as we made plans to barbecue together that weekend.
“Okay, but can we do it on Sunday? I was planning on getting my family together on Saturday to tell them about Nevaeh’s condition and talk to them about us,” I told him.
“Really?” he sounded shocked. I can’t say that he was the only one. I was surprised by my own actions.
“Yep, really,” I laughed. “The way I see it, you’ve been nothing but good to my daughter and I. My family’s going to have to learn to accept you. You’re a good man, Dale Halloway.”
I called my family when I woke up, eager to see if they could make it over to the house on Saturday. My mom and little brother Terrance said they’d be there, but Jason couldn’t come. Tony said he’d come too, but could only stay for an hour or so. As Saturday morning approached, I found myself more nervous than I’d been all week—and that was saying a lot.
As my mom and brothers gathered in the living room, I had Nevaeh p
lay in her sandbox in the backyard. They eyed me suspiciously as we sat down.
“So why’d you want all of us together?” Terrance asked.
“I needed to talk to all of you about a couple of things and figured it would be best done in person. First, I want to speak about Nevaeh and her condition,” I started. They had a lot of questions about her disease, and I did my best to answer them. I noticed Tony watching the clock.
“Hey sis, I hate to stop you, but I gotta go. We’re having a basketball game at the park this afternoon and I got $50 ridin’ on it. Gotta shoot them hoops, know what I’m sayin’?”
