{Part 3} Lily’s Journey with Juvenile Arthritis

Fall 2011. It has now been 6 months since Lily’s first knee injection, and about 8 months since we found her initial swollen knee.  We were once again facing Lily going back in for more steroid injections. Her right knee, left knee and the top of her right foot all had fluid sitting on the joints.

Long story short—the process was the same—IVs, screaming, tears—but this time 3 injections sites instead of 1. It was an outpatient procedure and we were home the same day. The whole process went a little smoother (on mom and dad’s end anyway) because we knew what to expect.

This time, we were more fortunate. The injection’s effects lasted about 10 months. However, in September of 2012, we were blindsided. We had just sold our house and were living in a rental while we built our new home in a neighboring town. Rental living was an adventure for sure! The mice that were coming out of the fireplace in the middle of the day and multiple sewer backups in the basement (a ton of our belongings were stored down there) added to the circus that had become our life. With the twins in kindergarten and a 1.5 yr old at home, living out of boxes was once again chaos at its finest. Add in no air conditioning (in August) and a train that came through our backyard at 11:30 pm most nights, and you can only imagine the wonderful moods we were all in on a daily basis!

As for Lily, her chaos was worse than anything we were dealing with at the house. We were back in the rheumatologist’s office with another swollen knee and foot. X-rays were done to make sure that it was just fluid and nothing more serious causing the pain. Fluid was confirmed once again. This time, steroid injections were not an option. It was time to jump into the world of arthritic medication with Methotrexate (MTX).

Methotrexate is a chemotherapy and immunosuppressant drug. It is used to treat cancer of the blood, bone, lung, breast, head and neck. And, rheumatoid arthritis.  

We were sat down and told that because steroid injections had been done twice with no lasting results, it would be a losing battle to continue. After hearing the side effects—nausea, vomiting, mouth and throat ulcers, diarrhea, loss of appetite, weakness and a decreased immune system—we were stunned. As a mom, I was terrified at the thought of injecting a chemo drug into my cancer-less little girl. There had to be something else.  Then I learned that I would have to do the weekly injections. WHAT!?

We went home to process all the information that was just thrown our way, and the next day I was on the phone with Children’s Hospital of Wisconsin in Milwaukee asking for an appointment with their rheumatology specialist to get a 2nd opinion. This was extremely hard for me. We had been through so much with her current rheumatologist, and respected him greatly. He had never led us astray, and I almost felt as if I was going behind his back, checking to see if he was right in leading us to this drug. THE GUILT! I felt just awful. My husband rolled his eyes at me. He said—are you more worried about our doctor’s feelings or your daughter’s health. 2nd opinions are a commonality in the medical world. And you know what, that is not how I was looking at it, but completely true, and that outlook has stuck with me since that day.  

And, of course, the specialist at Children’s Hospital knew our doctor. He said his course of treatment was the correct thing to do and is what they would do if she was their patient. They reinforced that he was one of the best pediatric rheumatologists in the state, which made me feel good. But, I was still sick at the fact that this course of treatment was going to be Lily’s new normal.

The next week we had a consultation with our rheumatologist. We found out that in the short time we had waited, the arthritis had now spread yet again. It was in her hips, neck, elbows, wrists and fingers, along with her legs and feet. To make matters worse, the week before this appointment we had been to the eye doctor and he had found 3 “cells” in her eyes. Yes, the arthritis had spread to her eyes. Inflammation in the eyes is called Uveitis, and it is serious.

We had no choice. Something had to be done, and we knew what we had to do.

Methotrexate (MTX) it is. One injection weekly on Saturdays to allow her the entire weekend to get the side effects manageable before school starts again on Monday.lily's needles

Naprosyn to aid in the pain and help reduce the swelling.

Folic Acid to accompany MTX. This helps prevent mouth and throat ulcers from forming.

Miralax to aid in the crazy constipation that accompanied the drugs.

Saturday Evening: First Shot. Went as expected. Crying from Lily. Nervousness and guilt on my end.

Saturday Night: Lily is up vomiting, crying and shaking in my arms (probably from being scared more than anything).

Hello Laurents—meet nasty chemo drug. And this is supposed to make her better?

Both the guilt I felt over injecting this drug into her, as well as a mom’s natural “urge” to blame herself for something clearly out her control, were becoming overwhelming feelings in my life. Seeing Lily brought to tears each week on “shot day” (as so many of us in the JIA world call it) gave the entire house anxiety. Each week I would silently think to myself “is this seriously our new normal?” It has to get better, right?


 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.  

One Response to {Part 3} Lily’s Journey with Juvenile Arthritis

  1. Sandy Ehren May 18, 2017 at 1:55 pm #

    Anne
    You are an amazing Mom to an amazing girl. It hurts to see one of your children hurting and as a Mom I would rather just take the pain myself than have one of my kids suffer. I know that’s how you feel too. However, I have seen Lily be just a regular kid and smile a lot even though I know she hurts most of the time.

    Thank you for writing about Lily. It helps all of us understand the disease better and better appreciate what you are all going through.

    You, Lily, and the whole family are in my prayers.