Living with an Invisible Illness: Lily’s Journey with Juvenile Arthritis

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LilyWhen you reach the point in life where you want to start a family, you are full of optimism. You are excited and nervous and feel like you are completely ready yet more unprepared for everything that is about to come your way. And then you find out you are having twins. Excitement, anxiety, anticipation and a bit of apprehensiveness were all flowing through both of us throughout my pregnancy. And then, the twins came, and our household was chaos at its finest.

Making it through those first couple years made Steve and I feel like we were superheroes. It was winter 2011, and our twins, Lily and Aubrey, had just turned 4 years old at the end of January. One night, as I was drying Lily off from her bath, I noticed that her knee was bulging. I had her stand up, back away from me, and as I sat there, 5 months pregnant with our 3rd child, I stared at my daughter’s knee, which was the size of a softball.

I was the one who usually did baths (during the day when possible) and got the girls dressed and up and moving. I didn’t recall her knee looking like this the day before–this had literally happened overnight. That night, Steve and I were both on bath duty, and I have never been so thankful that he was right there with me.

I called him over and told him to look at her knee. He agreed it was swollen, and asked if I remembered her falling or bumping it or anything in the last day. I couldn’t recollect anything, but was hoping she had just twisted it or banged it on something and the swelling would go away. It had to, right?

A few days later, and it was still swollen. Family told us it was normal—likely having to do with growing, or a reaction to some sort of trauma, causing “water on the knee”, and it would eventually go away. Well, it didn’t, and before we knew it, we found ourselves in our pediatrician’s office.

She could tell there was fluid present, but she honestly couldn’t pinpoint what was wrong. At this point, nothing was sore, and Lily still had full range of motion.  She asked us again if she bumped it or hurt it at all recently, and we said no. We left there with instructions to watch it, and if Lily spiked a fever, we should get her in to the ER as soon as we could.

No more than 2 hours after getting home from the doctor’s office, our pediatrician called me personally. She wanted Lily to come in and get fluid aspirated to check for infection. If the fluid was infected and left untreated, the results could be severe, and she wanted to stay on top of things, especially because it was a Friday and she wouldn’t be in the office again until Monday morning.  So before we knew it, we were spending our Friday night in the surgery center, having our daughter put under anesthesia for the first time, with a surgeon we were meeting for the first time that night.

As I look back, I see how routine this procedure was, but at the time, we were terrified. Lily was crying, frightened of everyone buzzing around her. She ripped the IV out of her arm twice before they were successful in putting it in and keeping it there (and that is only because at that point she was exhausted from fighting it). She was rolled off into the OR, crying, and we were left in the waiting room while Aubrey (her twin sister) colored obliviously. Before we knew it, she was back and we were on our way home. The results came back quickly—negative. No infection. Now what?

At this point, we were referred to the orthopedic surgeon who had done the aspiration. He examined Lily to see if there was something sitting under the radar. After 2 meetings with him and his PA, x-rays, more tests, etc., they found nothing. It had been almost a month since this all started, and her knee was still swollen. What in the world was going on with our little girl?

Trying to think back to that hectic time in our lives, I can honestly say that I don’t remember if it was the orthopedic surgeon or our pediatrician that recommended that we see a rheumatologist. Again, we were dumbfounded, looking for answers and logic in a situation that seemed anything but logical or explanatory. As I sat there that day, I remember staring at the bio of Dr. David Keim. A rheumatologist? For a 4 year old? How did we get here?

Be sure to check back in as this is only the beginning of Lily’s story. Anne will continue to share their journey with us.


Anne is a mother of 3 girls—twin 10 year olds and a 5 year old. She lives in Ledgeview with her husband Steve, their three girls, and their dog Daisy. She attended UW-Milwaukee and received a degree in Clinical Laboratory Science with minors in Chemistry and Nutrition. After having twins and staying home for 3 years, she somewhat fell into a position as a Coordinator of a non-profit adult literacy group, and has been working part time from home for the past 7 years.  She enjoys chatting with friends, cake decorating, volunteering at school, helping coach softball and is continuously getting reigned into new projects within the groups she volunteers for. With one of her daughters being diagnosed with juvenile arthritis at age 4, the Arthritis Foundation has become a huge influence in the Laurent family’s household.  

1 COMMENT

  1. Thanks for sharing! I had JRA as a child, which mostly affected my knees. Thanksfukly I grew out of it, but now I’m hyper vigilant when my daughter complains of pain in her legs. I look forward to reading more about Lily’s story!

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