Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
Here we are, one month later, and we are taking several twists and turns along our journey with “Arthur Itis”.Saturday, our path took us to Orlando to our first JA Family Connect event.We had such a wonderful time with our newfound JA Family and met wonderful people who all shared our acquaintance with Mr. Arthur Itis.
Logan had so much fun playing with all the itty bitty kids (he is definitely his mom’s kid…loves those toddlers and preschoolers)!He even got to meet some siblings going through the same experience as him.Most of them were girls, but he was just fine with that :O).
Parker Gets His Certificate
Parker was such a trooper.He played for a bit and even won a contest and was thrilled when he won a Colby video cam (much like the Flip Cam).He was also so touched when he received a certificate for his hard work with the Jingle Bell Run/Walk and for being the number one fund raiser for Tampa and number four in the state.To see his pride when he received that was a priceless moment.
Parker said that this was one of the best days of his life.He felt like he could be himself and that it didn’t matter to the other kids that he had to stop playing and sit.One other very special little girl, Emily, sat and talked and talked to him.They were totally engaged for quite some time as they shared their experiences around their symptoms, many medical tests, medications, treatments, and feelings.He hasn’t stopped talking about her since we got home!Actually, he has been talking about all the kids, but Emily definitely had a huge impact on him.At bedtime, he included each kid he met in his prayers for healing tonight.
The timing of the family picnic was perfection for our family because on Friday our journey took a very sharp and scary turn for the worse.Parker spent the day at Shand’s Hospital doing some tests and getting his infusion treatment and meds.His doctor spent a considerable amount of time with us, was very compassionate and thoughtful.But nothing could have prepared me for the news she shared with Parker and I.I had thought we had already passed this road, but she voiced our biggest fear…Parker has systemic JA, also known as Still’s Disease, http://www.medicinenet.com/stills_disease/article.htm.And as if that wasn’t enough to hear, but she is concerned he could also have a very rare autoimmune illness called juvenile dermatomyositis (JDM), http://www.curejm.com/.That was quite a moment…I literally had to catch my breath as I fought back my tears for my son’s sake.She then went on to explain that she is very concerned about Parker and that we have to stop the progression of the JA.He is failing all the TNF biologic drugs and so we are to only wait one week and if he is the same or worse she is going to change his infusion treatment.In the meantime, she is setting up an MRI to look at how his muscles and myelin are behaving.And this may confirm if he also has JDM.So now we wait for the insurance to approve.We are getting very good at “waiting”.So, when we were at the picnic, I was asked to introduce our family and the kind of JA that Parker has…and for a moment I didn’t know if I could say the words aloud:“He has systemic JA.”It now feels all too real.
After a long day of tests and infusions we journey home.
Life can change in a moment… Our hugs and prayers go out to one very dear little friend with systemic JA who was happily riding her scooter and giggling with all the little girls yesterday; and today she was admitted into the hospital.Love your children dearly and tell them you love them.