Bad Stuff Happens to Good People...

Trying to make up some work hours today and feeling a bit paralyzed in working.  So I just had to stop and write a moment.  This week has been incredible.  It began with having to take Michael for his scope and finding out that my grandma was in the ER and being admitted for her heart after a horribly pain-filled weekend for Parker.  And we also received news that one of my sisters was being scoped too.  Then on Tuesday we ended up in the ER for Parker.  Thursday we did tests on Parker’s heart.   I also found out on Thursday that my grant at work is being significantly cut.  Friday Michael had blood work and scheduled a scan for next week and it was infusion day.   Needless to say, Parker only made one period of school all week….And today, I woke to my other sister having to go to the ER.  And yet as I try to be “productive” I cannot because I just need to reflect on the week.

Michael’s scope went well…quote from the doc, “well, good news…he doesn’t have cancer” so now we can focus on his kidney stones, yet again.  But that we can handle.  Grandma is doing better, meds are adjusted and I am happy to say she is home and in great spirits.  My sister is still waiting on her scope results and my other sister is now home from the ER and also has a kidney stone.  So we can now start a kidney stone club (2 sisters, my mom, my aunt, and my hubby…any other takers….). 

Parker went to his pediatric rheumy yesterday and had his infusion.  We got to spend some time with friends.  Parker’s buddy Mark (same age) was there with is sister who was getting her infusion too.  And we met another lovely girl and her mom.  She is 14 with spondy  JA and hasn’t met any other families yet.  She now has met two J and we are surely going to get her connected.  And we brought another huge batch of infusion treasure box items.  Thanks again to everyone who donated.  We still have enough here for about 2 more trips.

Parker’s heart is doing good and we are so very thankful!  Even his pericardial effusion is better.  What a relief!  He is still having vasculitis and bruising.  And the doc is most concerned about his GI issues and would like him to be seen by a pediatric GI doc.  So that is our next stop.  He does have some pleurisy too.  Parker took all the news well.  Even his doc commented on his strength.  We also discussed his appointment with the physiatrist and she agrees with his recommendation for night splints on his wrists and ankles and a new wheelchair.  We reviewed how PT went and that we need to start OT.  And my goal prior to the next visit back is to get Parker a counselor.  We also discussed this and she was really good with Parker and explained to him that all that he is going through would be hard even for an adult and that it might help to just talk about it with someone.  Finally, the doc and Parker discussed that it was time to get a port.  I have to say that I was not surprised…actually Parker prompted the conversation because he told her that every time he comes, it take 2-3 sticks to get the IV started due to scar tissue and rolling veins.  So, we need to schedule getting that done too.

In the midst of all this craziness this week… I had begun discussing with Michael the idea of reducing my hours to 32 hours.  We sat last weekend and I could not figure out how to get more than 35 hours in, in a week because of all the medical stuff and therapies.  Not to mention that Parker is on an altered schedule with his IEP and Logan is very active with high school (and we want to totally support his involvement).  So I began discussing this possibility with work and I can do this and maintain health insurance, so we are pretty sure that I will move to this soon.  Because of this previous discussion of reducing my work hours, when I got the news that my grant was being cut 18% this seemed like a natural solution to that problem.  Otherwise I would likely have to let someone on my staff go. 

 I know that bad stuff happens to good people…but good stuff does too.  We have met amazing people through this whole JA experience.  We have seen the good in people.  We have received love and support.  And we are watching our own children strengthen and bond even more while also reaching out to others, advocating, and teaching.  Many children need this love and support.  Please continue to reach out, advocate, and educate others about JA.

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.