Addison’s immune system was attacking her entire body from the inside out…
Addison is a fun loving girl, full of life, and has an imagination and vocabulary that amazes us every day. She is one of the toughest 3 year olds that we know.
In March of 2016, Addison was hospitalized for high fevers and a full body rash. after a million dollar work up (including anesthesia, biopsies, ultrasounds, heart tests, and bone scans) to rule out things like meningitis and cancers, she was diagnosed with Systemic Juvenile Idiopathic Arthritis (JIA). Like most people, we had no idea that kids get arthritis too. But this wasn’t your run of the mill, my knees and hands hurt, kind of arthritis–Addison’s immune system was attacking her entire body from the inside out. At the time she was diagnosed, her teams of doctors were concerned about her liver, heart, and lungs.
They started her on what appeared to be our wonder drug, and after a battle with the insurance company, we finally got to come home after 10 days. Over the next several weeks, she got worse instead of better (turned out she had a drug reaction called DRESS). She was started on high dose steroids as we changed treatment plans in May. The new medication worked for her for about 6 months and she was able to wean off steroids before she had her first JIA flare up. A few months later, in February 2017, we were struggling again with fevers and tried another go round with her first treatment plan. We quickly abandoned this after the drug reaction was confirmed by skin biopsy.
She was started on high dose IV steroid therapy, but this time that wasn’t even enough. She continued to have intermittent fevers and her lab results showed she was in a potentially life threatening state of JIA, called macrophage activation syndrome (MAS), where her immune system was killing everything in its path.
Addison was started on an IV infusion that she was to get every two weeks. Her fevers subsided after a couple of days, but it took several weeks for her to start feeling better. In March 2017, she was admitted again for concern for internal bleeding and abnormal liver tests. In the end, her doctors think that these were related to her body recovering from MAS. So she continues on her infusions.
She underwent surgery to have an internal IV port placed, which makes our bi-weekly appointments much easier since they don’t have to search her arms and legs to poke for an IV. If she continues to do well, they might plan to spread out her infusions and be able to stop them at some point. But only time will tell.
Some kids “grow out of it” and some only achieve remission while on medications. If treated poorly, JIA can develop severe problems–joint pain, need for joint replacement, heart and liver failure, or MAS to name a few. Our hope for Addison is that she can maintain remission with or without medication and avoid the life-altering complications. She sure is a tough kid!
This summer, she has been enjoying being a toddler–going to the zoo, movies, pool, and cabin have been highlights of our summer! She even pretends to play volleyball in the living room and “falls in the sand” ?. We are hopeful to make it through the winter without a flare, since anything that activates her immune system has a potential to send it out of control.
Lastly, a huge thanks to all of our family and friends. Many have stepped up in big ways to help out, whether it be donations via our gofundme page, making meals for us, watching Addison when she is unable to attend daycare, or saying a few extra prayers. We could not have done it without everyone by our side. We are truly blessed to have such wonderful people around us.
❤️ Jordan, Kaitlin, and Addison Jensen