Sunday, March 6, 2011

"Arthur Itis" Leads Us Down a New Path...

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.

Swallow Test

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,  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),  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.


  1. It is a path that no parent raising a child with JRA ever wants to hear. "Systemic JRA" I often find myself asking, "why" ad when will this all change and let us just life a normal life for a bit. God has a plan and picked our family to be an example to others. I strongly believe God has picked your family, too. Parker is so lucky to have his family, the best support system (mom, dad and Logan). Stay strong...and I am so THANKFUL you are in our lives! I pray for good results for Parker and this destruction of Mr Authur is causing for Parker can STOP right now! I am ALWAYS here for you no matter what time of day or night! Your family is certainly part of our family's life. I hope this JRA journey has a better outcome and we can find a drug to help manage this awful, invisible disease!

  2. Your amazing for dealing with all of this so positively. Things will get better. Dont give up hope. The switch of infusion treatment may be just what he needs to see progress. the labels docs put on illnesses are just labels. have faith - know that all children are different therefore react differently to treatments. he will get through this and so will you.

  3. I am with Mrs. Sloan. :) I know that God has a plan, and somehow we have been blessed with these amazing families to deal with such heartache. I believe that we are going through this to help other people, and for some greater purpose. I think this is making all of you stronger, as it is my family. It's so wonderful when you have a family that grows closer together through such chaos. You are all amazing!!! I am so blessed to have met you all. Like Emily, Parker is such an amazing little guy. I am so, so thrilled that they have found each other. It meant just as much to her as it did to him. And I thank God that it isn't brain cancer. I read often about Kate McRae who has been battling for about 18 months now. Her father is a pastor, and millions of people are praying for them. Yet, her brain has developed 2 new areas of cancer after "beating" the first spot. I don't know what God will do with that, but they trust Him to do what He will, since she is His. I trust Him with our kids. We can pray, guide, lead, pray, look for cures, but since there is no cure yet, I guess Hope & Prayer are our best bets... I am always praying for you all.