Thursday, July 1, 2010

life in process...

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.

8 comments:

Soozcat said...

Aw, Dori. I wish I could give you a hug.

While I am inexpressibly sad to hear that your family and your sweet girlie have to go through this, I'm also filled with hope for her. She's got you and Sean for parents, and you don't seem the types to take this lying down.

Now you know what you're dealing with--not that having a label makes it all better (far from it), but it's almost always preferable to the constant fear that comes from not knowing. You have concrete information that can be acted upon; that's a blessing.

Much love and prayers coming your way.

marit said...

(((HUGS)))

thatladybug said...

Dori, I'm sorry to hear of your daughter's diagnosis. I had JRA from 12-19 years old. I watched my children closely for signs of it, so far no RA.

She has several things going for her that will make a world of difference, parents that are seeking the best treatment possible, a good diet and a good loving home environment. Those things are key to helping her through this.

Stay strong and positive.

Praying for her health.

Dori said...

Sooz, I like labels--on things, not on me. :) Labels help me put things in their proper boxes. I can't quite describe the level of relief I feel at having a diagnosis. And the girl is taking her medicine like a Champ! She's even started giving it to herself. I love this child!

Ladybug...from the way it was explained to us...it's not something one grows out of? Just goes into remission for a while? I'd very much like to hear more about your experience--what form, how severe, stuff like that. I've pretty much stayed away from Googling it--that's just a level of misinformation I don't need!

Our greatest concern is the fact that the form of arthritis her dad has is a paternal gene (just found that out too). BUT--we're armed with the knowledge of what to look out for and everyone is aware that it is a possibility.

For now, though, we're going to enjoy the rest of our summer! We're incredibly blessed with a very small but mighty support group of friends and family. Thanks for the hugs and support from you guys too!

Meadowlark said...

Thinking of you and yours and praying for healing. Love you.

thatladybug said...

Dori, I'll send you an email today.

MissKris said...

Forewarned is forearmed...no matter how scary such news is, there is something calming in the middle of the storm when you finally know what the diagnosis is. I think you know by now how upfront and honest I like things to be...no wishy-washy stuff for me. Cancer? Death? Job loss? Whatever? Give it to me straight. If I know what I'm 'fighting', that's half the battle right there. Bless her darling, precious little heart, Dori...she will most definitely be in my prayers and everyone else's I know. We are in the midst of a Camp Meeting at our church and there's a whole lotta praying going on there. I will make sure she's right there on the Prayer List. Even in the dark times, God is good.

Anita said...

Thank you Dori for sending me this link.

On this day (the day after the death of Elizabeth Edwards), I find it hard to get motivated to accomplish the things on my list.

The news of your daughter puts me into deeper thought, about the important things in life.

It's been a while since you posted this, so I hope you all have had major attitude adjustments and are consistent on the "moving forward" path.

God bless your little darling and her loving family.