I Wish There was a Cure for JA!

Once again, a lot has happened in a short period of time.  In July, we were very excited to see Parker make some progress for the first time in 2.5 years.  For about 3 weeks, we really felt like the Actemra was starting to make an impact on slowing down Parker’s systemic JA.  We even saw his CRP levels drop to normal and he was moving smoother and out of his wheelchair a little more often.  So when we left for the Juvenile Arthritis Conference in Washington DC, we had some new found hope.  The conference was the most amazing experience we have ever had as a family.  Not only did we learn a ton, but our children and us made some wonderful connections and had lots of fun.  You can see our family JA conference video at this link:  http://www.youtube.com/watch?v=glSnMQn9ZHg

Soon after our return home, Parker got very sick.  We ended up spending 9 days in the hospital because Parker got a virus.  The virus caused his systemic JA to flare horribly.  I have to say that this is every parent’s fear for their children with sJA.  His joints swelled, his systemic rashes flared, he could hardly move for days (although he gave it a good try daily), his stomach and bowels got so bad he didn’t really want to eat, he got petechiae (tiny bruises) again, and his liver, muscle and heart enzymes went wacky.  So when he said his whole body hurt…his whole body hurt!  On day 4, he started running a fever and that caused great concern.  What I learned while he was in the hospital is that he will not present like most kids when he gets sick because of all the immune compromising drugs he takes.  So for him, he seems to have wacky body temperatures.  He hangs at 95-96 degrees a lot…when he gets even to 99-100 it can cause great alarm because he might not run a fever when other children would. 

Shands hospital was absolutely amazing.  The pediatric infectious disease doctors teamed with his pediatric rheumatologist/immunologist and the nursing staff was the best we have ever experienced.  I had enormous faith in their ability to provide the care that Parker needed. The child life specialist made a very special connection with Parker and even on the days he could not leave his room, she made it a point to bring activities and volunteers into his room.   The love and support that we received from so many people (some strangers to Parker) showed him that there are people who were praying for him and cheering him on to improve and we are so incredibly thankful for that.  Our last few days there were the hardest for me, although I could clearly see that Parker was slowly starting to improve.  I realized that Parker’s disease progressed during this virus…even though I had the sense something was happening with his heart, they shared the news that there was swelling and fluid around his heart (pericardial effusion).  I think I was handling things pretty good up until that moment…my heart ached for him so deeply it hurt.  I listened to his doctor explain the complexities of systemic JA to the resident doctors and it all the sudden seemed REAL…it was quite a moment…I remember thinking, this doctor is incredible and she is impacting the minds of these newest doctors and a part of me was cheering her on for advocating and educating… and then another part of me was thinking this is MY child… and as much as I try to explain to some people how real this really is, they just don’t or can’t seem to see the enormity of it.  I shared with the doc and the nurse practitioner that I wish they could explain sJA to “everyone” because it is so hard to explain.  They could relate.  They said that sometimes people say things without realizing what they are saying…even other medical professionals and they are always trying to educate.  For some reason that gave me comfort. 

Parker has had one infusion since coming home and we are slowly decreasing his steroids with success.  Yes, he still is hurting, but his joints are not swelling and he seems to have fewer rashes and better energy.  He still has these little bumps that we need checked but he is doing better.  In fact, he started school Thursday.  We LOVE his school!  They allowed him to do a presentation to the entire 7^th grade!  We filmed it but the quality of the sound is horrible.  We are going to re-film it this weekend and try to post it.

We did have his IEP meeting.  He is now classified as “Other Health Impaired” and is on an altered scheduled.  He has a shortened school day with 2 classes through virtual school.  Virtual school starts Tuesday.  He is also staying home on Wednesdays to give him a “down” day.  The autmentive/alteranative technology specialist is coming soon to the school to evaluate him to see if there is a form of technology that could help him out since writing is incredibly hard for him now.  And Hospital/Homebound is still our challenge.  Will update later on that.  I am choosing to focus on the positives tonight J

 

Parker also had his 12^th birthday a week ago.  He celebrated it twice.  One party with family and another with his JA friends.  His good friend Sadie also had her 7^th birthday and together they collected presents for the infusion room’s treasure chest.  It’s going to take us about 3 to 4 more visits to drop off all the gifts we got so much!  Thank you everyone! 

In closing, with every birthday candle blow-out, cake cutting, shooting star, fallen eye last, dandelion blow….the wish is always the same:  We wish for no more JA pain and a cure for all children!  Prayers, love, hope, and healing hugs to each child who keeps on enduring with all the resilience their little bodies can muster up.