This is a fictional story. All names, places, and viruses are used fictitiously. Resemblances to actual persons, living or dead, or actual events, past or present, are intentional.
If you haven’t read from the beginning, please start at Chapter 1 here.
***
Due Date: 122 days away
When we attended the arthritis walks or even that conference the one year in D.C., we heard from all the other parents how fortunate we were to have a rheumatologist in the state, much less the city, where we lived. I mostly took it for grated. It had become a normal thing for us. Once a quarter or so, we paid Dr. Madison a visit, she prescribed some medicine, and we continued the routine.
The latest prescription had us giving Kenneth a shot once a week. We tried to do it on Wednesday nights, but we didn’t always remember to set out the syringe. It took about half an hour to warm up after we took it out of the refrigerator. So sometimes we’d end up doing it on Thursday or even Friday.
It was painful. One dad I knew told me that he and his wife would give their son his shot while he slept. He’d practically lay on top of his son to hold him in place while his wife injected the medicine. Their son would immediately wake up of course, thrashing in pain, but that’s the only way they were able to do it.
That’s not how we did it.
“It’s time for your shot,” Liz would say.
Kenneth’s eyes would drop. “Okay.”
But he always did it, like a trooper.
As long as we didn’t forget it.
We weren’t scheduled to see Dr. Madison for another month. She’d never called us to set up an immediate appointment, even when Kenneth needed steroid injected into his knees.
On the drive in, Liz told me what she’d heard from some of the other mom’s. A bunch of the other parents were taking their children off their medicine. Almost everyone who posted had stopped methotrexate. A few mentioned grennadryn. One got more specific with their reasoning behind their decision.
Arthritis is an auto-immune disease. Essentially, Kenneth’s immune system was raging out of control. The downside was that it was eating away at his body, destroying it. The upside is that he didn’t get sick. What all the medications did, though, was weaken his immune system, so it wouldn’t keep eating away at his body. The argument these parents posed was that by going off the medications temporarily, their kids would regain their out-of-control immune system long enough to fight off the virus.
Of course, in the meantime while they’re not contracting the virus, their immune system would be doing irreparable damage to their joints, locking them up.
“I’m not going to get into all the rumors. I’m sure you’ve heard them by now.” Dr. Madison usually had a soft bedside manor. Working with kids and their parents for two decades had taught her more than two decades of school ever could. But this time, she had Kenneth wait in another room and got right to the point with us. “The reason I called you in was to talk about your options.”
“What do you mean by options?” Liz looked concerned.
So did Dr. Madison.
“You have two. Our official stance is that all patients should remain on their current prescriptions. You two know as well as anyone what going off medicine looks like for Kenneth.”
I flashed back to six-year-old Kenneth in a wheelchair. He’d been back to the hospital two or three times since then.
I blinked a couple times. Shepherd was trying to climb onto Liz’s lap. I smiled softly at him.
“What’s option number two?” I knew the answer but had to ask.
“I’ve had two patients die already.” Dr. Madison crossed her arms. “Five others are sick. The official numbers say Kentucky is at six total deaths. None of those were my patients.”
She let that sink in. It wasn’t the answer I thought she’d give me. It didn’t just sink in. Even the official number she quoted was higher than I’d heard.
“Do you understand what I’m saying?” Dr. Madison asked.
No. No, I didn’t. I didn’t even want to.
“Shepherd, stop. Please.” Liz set him back on his feet.
I squeezed her shoulder and looked back at our son’s doctor.
“I think so,” I said.
“You’re saying you recommend Kenneth to go off his medicine?” Liz asked. She needed to hear it. I did too. We needed some certainty for a prescription like that.
“I’m saying the official stance is that all patients should remain on their current prescriptions.” She said it like a memorized line. She looked both of us in the eyes and nodded.
We replayed the scene over again to each other on the drive home.
“Was she serious?” Liz said.
I tried to process it as I drove. “The odds are still so low. But I’m actually not as worried about laying off the medicine for a few weeks. We’ve done that before. He’ll get a little stiff.” I looked at Kenneth in the rear-view mirror. “But you’ll be okay, right? It’s not like you’ll be outside running around with everyone during this thing.”
“Did you hear her?” Liz said. “She said two of her patients died? From this virus?”
It didn’t make sense. The moms in the mom’s group were the crazy ones. They were taking their kids off their medicine on their own. No one had told them to do that, right?
After we got off the freeway, the last two or three minutes through our neighborhood lasted a long time. We parked in our driveway. Quiet. Even Shepherd.
I looked back in the mirror again to Kenneth. He was staring out his window, eyebrows wrinkled, his hair all pushed toward that side.
“What do you want to do, Kenneth?” As soon as I said it, I knew I shouldn’t have. I wanted to give my kids some decisions, to teach them how to decide. But not like this, not decisions that carried so much weight, or potential for regret, depending on how they turned out. I didn’t want him to have to second guess himself. I wanted him to be able to blame me if I made the wrong call.
He turned his head toward me, not the mirror.
I met his eyes over my shoulder, my hand up behind Liz’s seat.
“It’s okay,” I said. I looked across to Liz. “We have a couple days to think about it.”
