Remembering the past...

I was going through my computer files, looking for a writing sample. I found this piece that I wrote six years ago.

It's long and wordy, but it captures a really difficult moment when Ellie was diagnosed with JRA.

I remembered most of what happened the fall she was diagnosed, but there are a few memories captured in this piece. That's one of the reasons I love writing... It captures details that our brains are too quick to forget.

A diagnosis
You may have seen her on the playground. She’s more tentative than the other 3-year olds who charge ahead on the balance beam. She’s also the one who gingerly navigates her way up the stairs to the top of the slide, pausing between steps as she puts her weight onto one of her legs before pulling up the other.

She has arthritis, and she is three-years old. Children get arthritis, too. It’s something I didn’t know until my daughter Ellie was diagnosed with Juvenile Rheumatoid Arthritis (JRA) just weeks before her second birthday.

Until that point, I thought arthritis was a disease for old people, people who had lived their lives. I didn’t know it could strike children who were beginning theirs.
What I did know at the time was that Ellie had stopped walking up and down the stairs. She wanted to be carried all the time and was grumpy after her naps. She had lost her sense of independence. I thought it was a stage – a transition, I convinced myself. I didn’t recognize the clinical signs – the swollen knee filled with fluid, the swollen joints on her fingers and toes, the enlarged ankles I thought were merely chunky toddler ankles.

Then one morning as my husband headed to work, he picked her up to kiss her goodbye. As his hand grasped her knee, she screamed in pain and started to cry. When my husband insisted we call the pediatrician, I thought he was being an alarmist. I fully expected to talk to an advice nurse who would suggest ice – perhaps children’s Motrin. I didn’t expect to go into the office.

I felt a little silly as I talked to the pediatrician. My husband and I were apologetic, as if we were wasting her time, but she assured us we weren’t. Normal
toddlers don’t stop walking unless there’s a problem.

The pediatrician asked all the right questions:
- Did Ellie somehow injure her knee?
- Is there any way she could have twisted it?
- Did she fall on her trike?

NO, NO, NO, I answered, wishing I could say YES and leave this examining room – walk away as if this was all a silly mistake.

The doctor extended both of Ellie’s knees on the examining table. Then, it became obvious -- even to our untrained eyes – that something was wrong. One knee was clearly swollen. The doctor touched it and said it felt hot. Then, she systematically moved through Ellie’s joints, looking at each one of them.

Before we left, she x-rayed Ellie’s knee and confirmed that there was fluid surrounding it. She ordered blood work and talked to us about what might be wrong. She reassuringly told us that it was probably nothing, but we needed to know what she was checking for. Among the things she mentioned was Juvenile Rheumatoid Arthritis (or JRA).

She asked if we had a history of arthritis in our families. My husband and I looked puzzlingly at each other – both of us racking our brains. The only images that came to my mind were pictures of great-aunts and uncles, their fingers curled with the disease. My grandmother gingerly getting out of a chair. Old people.
I couldn’t break the image.

Old people got arthritis. Not children.

Both of us reeled off names of great-aunts, distant relatives who suffered from what I now know is osteoarthritis. I felt tremendous guilt. It was surely my fault. My guilty genes. My responsibility that my 2-year old couldn’t climb the stairs, that her knees and who knows how many other joints ached.

But still, we tried to believe what the pediatrician said. She reassured us that it was highly unlikely that it was JRA. In her years as a pediatrician, she had never diagnosed a child with JRA. For some reason, this felt reassuring – even coming from a doctor in her early 30s

Late at night when my thoughts drew energy from the dark, my mind would race. What if? My husband and I searched the internet, burying ourselves in bulletin boards devoted to families with children suffering from JRA. Wheelchairs, joint injections, drugs, hip replacement. We were scared to death.

Our families tried to reassure us: it can’t be. The odds are in your favor, they said – not realizing I was manic about numbers. Obsessive. I knew the odds.

According to the Arthritis Foundation, 300,000 children in the United States suffer from JRA. According to WebMD.com 1 in 1000 children under age 16 have JRA. I become obsessive about these numbers. I played with them in my head. I asked my clueless husband to pick a number between one and one thousand. If he came within 100, I panicked.

It took four days to get the test results back. Friday morning, I stood in our kitchen, bracing myself in the doorway between the dining room and kitchen. It was summer, and I had on a t-shirt from a running relay I finished the weekend before.

When the phone call came from the pediatrician, I kept looking down at my t-shirt as I listened. As her words echoed in my ears, I kept thinking that my daughter would probably never run like I do – never get joy from heading out for a five-mile run. Never understand the serenity I find on the streets, alone in my head with just the sound of my heavy breath in my ears.

“I have bad news,” the pediatrician began. The words echoed in my head as she continued. “Ellie’s ANA test came back positive, which is highly conclusive that she has Juvenile Rheumatoid Arthritis.” She continued on, giving me details about the other tests she ran – all of them suggesting her diagnosis of JRA. The phrase “highly conclusive” kept ringing through the rest of the medical jargon.

Then, she stopped. Her tone changing from doctor to friend, “JRA is not something you would ever wish for your child, but there are worse diagnoses. JRA is not fatal.”
She game me the name and number of a pediatric rheumatologist practicing at the children’s hospital in the city where we lived. She talked about how lucky we were to have a pediatric rheumatologist in the area – a fact I took for granted at that moment, although I never will again.

The pediatrician had called ahead to discuss our case with the rheumatologist. They had discussed the numbers, the lab work, and he concurred with her diagnosis. “Highly conclusive.” There was no backing out now. In fact, she had asked him about his availability in the next week, knowing that another day of unknowns would be brutal to us.

As we finished our conversation, my call waiting signal kept buzzing in my ears. I knew it was my mother, my sister-in-law, my husband. I lingered on the phone longer than I normally would, wanting to spare them the news, wanting them to have a few more moments of peace.

I realized I hadn’t moved throughout the ten minute conversation. I stood braced in the doorway, a small memo notebook in my hand with random notes written on them. These notes are now filed away in my bulging folder labeled JRA. Someday, I may be able to reread those notes and not be taken back to that day, to that doorway, to those words “highly conclusive,” written across the top of the page and underlined multiple times.

Since that day, we’ve been on a JRA rollercoaster as we’ve struggled to understand what it means to have a child with JRA (and the emphasis there is on the fact that she is a child first).

When we met with our pediatric rheumatologist, it became clear that we needed both a short- and long-term solution for Ellie’s joints. Her knee bulged with fluid, and as the doctor examined each of her joints individually, he would pause to point out which ones were swollen. On that first day, it was obvious that six were overly swollen, to the point of impacting her movement. The rheumatologist talked about joint injections, a process where Ellie would be put under anesthesia while steroids would be shot into the inflamed joints – all in an effort to control the swelling and ease the pain while we waited for the long-term medication to work.

That’s where it got scary. The long-term solution was a drug named methotrexate that is used to treat children suffering from cancer. Cancer. The big C word. The drug suppresses the immune system so it doesn’t attack the joints in the body, somehow averting the damage done by the disease.

For my husband and me, this was scary stuff. As someone who has shunned aspirin all her life, I could scarcely comprehend the thought of putting my daughter on something this powerful.

We went home from that appointment, armed with literature and phone numbers of a couple of families who lived near us and had children suffering from JRA. We made an appointment to come back in the next couple of weeks to check in. But every day, we could see Ellie getting worse, and every evening we devoted ourselves to research, pouring over information on the internet and reading all the literature we had received from the rheumatologist.

That next week, we called and asked to come in, to get the joint injections, and to start the scary medication.

The joint injections were scheduled right away. The rheumatologist was to inject steroid into six of Ellie’s joint to minimize her pain and to reduce the risk of damage to her joints. We took her to the children’s hospital early that morning, her belly empty of breakfast so she could handle the anesthesia. We were brought into a small room in the hospital where the anesthesiologist talked to us about what she’d be doing during the procedure. She let Ellie play with the small plastic mask that would cover her face to administer the gas, and she even let Ellie choose the scent of the gas. I asked if I could go into the room where they would administer the anesthesia. She explained that I could if the rheumatologist allowed it, but watching a child go under the effects of anesthesia was not easy for a parent to watch. I assured her that I didn’t want to be there for the whole procedure – just to make sure that Ellie knew I was there, that she wasn’t alone.

And so we went in together, and they let me put my little then-two-year old on the hospital bed. I rubbed her head as they put the mask over her face, and then they quickly signaled for me to leave.

I didn’t glance back. I was afraid of what I would see. I was afraid that I might see terror in my two year old’s eyes, and I didn’t know how I would ever live with that.

My husband waited in the small room next door. I pushed through the heavy door that separated the two rooms. It was September, but a small Christmas tree stood in the corner of the room, decorated with Halloween lights and small pumpkins. Together, we sat and stared at the tree and waited, trying to peek through a small hole in the door. Neither of us saying much; both of us wondering if we had made the right choice.

The procedure went quickly, and the nurse came out to tell us that the doctor thought it went well. He wanted us to come into the room, to be there when Ellie came out from under the anesthesia. They had prepared us for this, explaining that it can be extremely difficult for children to come out from under the effects of anesthesia.

As my husband and I walked into the room, I wasn’t prepared to see her, a beautiful two-year old girl with a mop of curly red hair, a white hospital gown draped over a portion of her and Hello Kitty band-aids stuck where her joints had been injected, the only sign that she wasn’t just resting peacefully.

The anesthesiologist told me to pick Ellie up and rouse her gently. I gingerly lifted her, shyly avoiding any of the Hello Kitty band-aids and the joints below them. She was disoriented at first, but eventually came to -- screaming and crying in pain or confusion. It was unclear what it was. The anesthesiologist suggested we sit in a rocking chair in the corner of the room