Malignant tumor...cancer...amputation...all of the really Bad Stuff had already been ruled out. However, I wasn't prepared for the second tier Bad News. There was another incurable she'll-have-it-all-her-life and-must-take-medications disease lurking...Juvenile Rheumatoid Arthritis (JRA).
The prolonged joint swelling has already left its toll...bony plates growing wonky, muscle loss and one leg growing slightly longer. I heard "irreversible damage". Sean heard "she'll grow out of it". I think I’ll split the difference and hope for the best. Given my daughter's genetics it's not like she was going to be a soccer star anyway.
Last week our almost four month journey for answers took us an hour away to Highly Respected Medical Research University and into the care of one of the most knowledgeable Pediatric Rheumatologists in the field. He listened to our tale of woe and took note of our journey. And he called it: Classic presentation of JRA.
We sat in his office for over an hour. Laying out a treatment plan. Discussing her future. Discussing what to expect and what to look out for. I held it all together until he reached the bit about medication. If the high daily dose of naproxen fails to get the swelling and inflammation under control he would then prescribe Methotrexate. We already have one family member on a weekly regiment of that particular drug. It does wonders for keeping the beast under control and allowing him to walk. However, the side effects kick his butt every week. And now this man was discussing placing my baby girl under it's control? Um...yeah...I lost it. Quietly though. And conveniently took the wee girl for a potty break.
Pauciarticular JRA, and in particular the one that effects little girls under the age of seven, comes with a nasty side kick: high risk of eye inflammation. An inflammation that if not caught early will cause irreparable damage. So, in addition to frequent--every four to six weeks frequent--visits up to Highly Respected Medical Research University, our baby girl gets to visit a Pediatric Ophthalmologist every four months. Her initial visit was Monday. And so far her eyes are clear. And the eye doctor lady is delightful.
Truths I’ve always known have been brought back into sharp focus over the past month or so. Life is fluid. Unpredictable and not always pleasant. Precious and short.
Earlier this week I officially resigned from my job. I’m finishing up the season--we have a race in September--but then my focus will be on my children. My family. My daughter. My son. And on my own list of things I want to Get Done in this life.