January 2017. 2017—How in the world did we get here already!? We were one of the fortunate ones who were able to go off of all medication [June 2016] for a bit. The thought of actually not injecting chemo drugs into our little girl was pure joy—seriously! I was so impressed with how she was handling things, and we had gone a solid 6 months without any issues at all—ANY! No joint pain, no eye issues, no anxiety-related instances (because the largest source of anxiety in her life had been taken out of the equation)! IT. WAS. AWESOME.
January 27, 2017. Is it crazy that I still remember the day? I’m not sure I’ll ever forget it. January has always been a hard month for Lily, and we can’t really figure out why. Yes, it has been when the temp usually drops and the snow REALLY starts to fly—but one would think that spring—in all it’s cold and wet glory—would be worse for those with arthritis. Nope. Every year, like clockwork, Lily would have a flare (while on medication). Luckily, since she was on meds, it would last less than 2 weeks, and her body would be able to get a grip on things and take over. So, what happens when you take the meds out of the equation? We were about to find out.
Pain. Tear inducing, not wanting to even play with her friends anymore pain. It started on the night of her school dance. I really just thought she was sore from running around with her friends all evening—doing the hokey pokey and chicken dance and everything else that comes with an elementary school dance. I gave her some ibuprofen and tried not to silently freak out that it was mid-January and she was having leg pain—AGAIN, for the 5th year in a row. If I really think about it, she was having minor pain all month leading up to this point, but there was no swelling. That all changed.
Over the next couple weeks, the pain and swelling got worse—and morphed into this awful, debilitating monster that took over her entire body. After a few weeks, I called the rheumatologist and had her seen. By February 7th, we were getting her tested for Mono because she was so exhausted all the time [test came back negative]. She was missing a ton of school—unable to get moving and function at the level needed to keep her attention all day. Instead, she would sleep on the couch for most of the day, and I would help her with her homework during times when she was awakeand could focus enough. Thank goodness for an awesome, understanding teacher who helped us through the entire spring.
February turned into March, and we were still no closer to relief for Lily. Knees were now swollen (so much fluid!), as was her left foot (it actually looked bigger than the right one!). We were having regular checkups, but nothing was significantly better. At the end of March, we had a regular eye check. When we go to the eye doctor, they do all the normal things that someone who has glasses would do, but they really focus on the pressure of the eyes, as well as looking right inside the eyes for inflammation cells. Lily had a few cells in kindergarten when she was diagnosed, but the methotrexate had taken care of those over the last 4 years. Well, take the methotrexate out of the equation and what happens? Uveitis.
Uveitis is the inflammation of the middle layer of the eye. The eye fills with inflammation cells. If left untreated, it can eventually lead to blindness. Damage cannot be undone. It was go time.
Methotrexate again—but this time, she was on double the dose she was when she went off the year before. She had to immediately start gel eye drops 4x a day (YES, during the school day—ugh!). She also re-started naproxen 2x a day, and had to take folic acid. Even with the folic acid, the methotrexate won out. Lily began to develop mouth and throat ulcers, which are literally one of the most painful things you can encounter.
And just like that, not only had we been brought back to square one, we had hurdled over it and were rushing towards an entirely different “game”.
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.