Juvenile Idiopathic Arthritis- Part 1

Juvenile = childhood

Idiopathic = no known cause; spontaneous

Arthritis = inflammation of the joints

JIA

I wanted to record what happened this summer. It helps me organize my thoughts, and it helps me to process the enormity of things. And maybe it could be a help to someone else out there!

May 29, 2026- A Friday

We drive 2.5 hours north for the annual Walk With Angels. It will be our 4th time attending. We paid for our business to be a sponsor because we love the United Angels organization and what they stand for so much. We have lots of family coming to the event to celebrate with us. We're all very excited.

We go to pick up Daddy at work in the afternoon, who sometimes works up in this area. I get Cooper out of the truck and find that he his favoring his left leg. He won't bend his knee. This is strange. Maybe his leg fell asleep while driving or something like that.

May 30- Saturday, The day of the walk

Cooper's leg does not appear to be getting any better. He appears to have something going on with his knee, or could it be his hip? The worry in my heart and mind grows and the day goes on. We run into David, a physical therapist who worked with Cooper the previous year at an intensive office. "How is he doing?" he asks me. "Well, he's been doing amazing. But he did start limping just yesterday. Would you mind looking him over real quick?"

David checks him out, tries to help Cooper bend his knee. "That's so weird." He is puzzled. "I would bet it's some kind of muscle strain."

We continue with the events of the day, but my mind is not settling as I watch Cooper struggle to walk. We aren't up north often, where there are a plethora of pediatricians. I decide to get him into a nearby office that same day, before we go home.

Just before we leave for the appointment, David finds us again. "I've been watching Cooper. That limp is driving me crazy." He looks him over again, but doesn't have any answers. My heart is growing heavier by the minute.

The 1st doctor appointment. Saturday afternoon

Me and Cooper meet with the pediatrician. James waits in the truck with the other kids. If we can avoid taking all three kids into an appointment, we will. After looking Cooper over and questioning me thoroughly about possible injuries, the doctor tells me she would recommend imaging and blood work.

"Okay," I say, "I understand the need for imaging, but why the bloodwork?" I'm trying to follow her reasoning.

"I would just check for any malignancies," she says. I notice her eyes avert from mine, just a little bit.

I press her. "But what exactly would you be checking for in the bloodwork?"

After a moment's pause, she tells me, "Well, I'm actually a pediatric oncologist, and I do sometimes see patients with AML present with a limp. And because he has Trisomy 21, we know he has increased risk for certain types of leukemia."

My heart sinks. If it would have been possible, it might have fallen out of my chest completely. My stomach twists into the kind of knots that don't go away. In fact, they will stay there without welcome for the next several months. The doctor goes on,"If he's not improving by Monday, I would come back up here and get those things done as soon as possible." I am trying not to let my head spin as we finish up with the doctor and I get Cooper back to the truck.

"Well," James wants to know what she said.

"I mean, she said it could be caused by many things. But she's a freaking children's cancer doctor, and she said if he's not better by Monday, she wants bloodwork done." My voice cracks. I'm trying to talk quiet, so our big kid doesn't hear.

"Babe, we don't know. It's probably nothing. Let's just wait and see," James anticipates how worried I am, and immediately tries to calm me. It doesn't work. As we drive home, tears flow from my eyes, as silently as I can possibly make them. James squeezes my hand and again tries to tell me not to worry. "I know," I take a deep breath. "It's just when an oncologist tells you... just hearing it said out loud..." I trail off. We both know how that sentence ends.

Monday comes.

Cooper has not improved at all. In fact, he seems a little worse. My panic is high. I try to call that same doctor we saw on Saturday to get an order for the imaging and bloodwork, but she's out of town. I call our regular pediatrician. It's 8am; they had just opened their phone lines. I go through all the hoops- leave a message for the doctor, wait for the doctor to get the message and respond, wait for the nurses to call me back and let me know. This could literally take all day, if not longer. I want this stuff done today, just like the oncologist had suggested. I call the pediatrician's office back several times throughout the morning. On my 4th call, with more than a little desperation and impatience in my voice, I tell the nurse, "We live 2.5 hours away, and I am driving up today. When an oncologist tells you to have your kid checked for cancer, that's not the kind of thing I'm going to wait around on. I want the orders today."

The orders come through almost immediately. Bless them for their promptness when a mother is worried. My husband goes with me. It feels like a big moment, and I think we both held our breath for the majority of they day. That evening, our pediatrician calls. "I don't see anything concerning in the x-rays, and his bloodwork looks okay, too." My shoulders loosen just a bit. I can breathe a little more deeply. "I wanted to call and tell you myself because I know when the word 'cancer' gets thrown around, it can be scary." I've never been more grateful to have used the same doctor for so many years, because he knows me and our family and I can feel that he actually cares.

"So, what do you think could be going on?"I ask.

"Sometimes kids get some residual inflammation following an illness. It's called transient synovitis. Has he been sick recently?"I'd never heard the term synovitis before. Little did I know just how intimately I'd come to know that term in the following weeks.

"No, nothing," I respond.

"Well, let's try him on some ibuprofen for a few days, and see if it helps calm the joint down. If not, I will want to see him myself. Does that sound good?"

What choice do I have, but to agree?

The Walk With Angels