Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
Today I take the leap…and write.Lots has happened but little has changed…at least physically…medically.But emotionally, our family is stronger…and getting better at dealing with the immense emotions that sometimes fill us.We want to stay positive and hopeful… we feel some people are slowly drifting away from us. We understand this, as we can barely handle what we are enduring…but we must and we do.
The doctor has confirmed (although we knew) that Parker is severe.As hard as it is to hear that your child’s condition has no cure (yes we knew this too)…but to “hear” it aloud…hurts to the core of our hearts.Yet, Parker’s doctor spoke with compassion, determination, and love.As real as she was about the enormity of what we are dealing with, she paused to be a real person and for that I am forever grateful.We are in this together…Our goal is to slow the progression of both the vasculitis (http://www.webmd.com/rheumatoid-arthritis/guide/vasculitis-treatment) and the systemic effects of the JA.Just to catch those up to speed who don’t realize what this mean.With the systemic effects of this disease not only are his joints at great risk, but also his internal organs (heart, liver, spleen, and eyes).We also talked about his physical activity.We agreed to let him try to be physical, even if we know the consequences…because if Parker is willing to deal with the consequences then so are we.After Parker plays physically, he usually is in immense pain and his joints, especially his ankles, balloon up and he sometimes needs an intermittent infusion/meds.But we all feel strongly that he needs to “be a kid” whenever he can.
We will do absolutely everything we can to stop the progression of his JA.The doctor even mentioned a child who had a whole bone marrow transplant but we are not anywhere near going down that road.The good news is that there is a new study through CARRA called RAPPORT (drug: Rilonacept) (http://clinicaltrials.gov/ct2/show/NCT00534495) and it’s for children with systemic JA (http://www.medicinenet.com/stills_disease/article.htm).Parker’s doctor is working on getting university approval right now to be a part of the study.This is huge; it means that there is still something else to try.But it is also incredibly scary…however; every biologic drug we have tried so far has been scary.
There is some really good stuff also happening in our life.We got a scholarship to go to the Arthritis Foundations Juvenile Arthritis Conference in WashingtonDC.This is a great opportunity to meet other families and to learn more about JA.The lead principal investigator (http://www.jrheum.com/subscribers/05/05/763.html) of the RAPPORT study will be at the conference and we will have the opportunity to hear him present.
Parker also went to camp last week at Boggy Creek (http://www.boggycreek.org/).Boggy is a camp for children with serious illnesses.It is one of Paul Newman’s “Hole in the Wall” camps.What an amazing place!I am hoping that Parker will blog soon about his experience there.In some ways, this experience showed him how involved he really is…sadly he was teased by some children with hemophilia (they joined children with JA that week) because he had to use his wheel chair and they didn’t understand why sometimes he needed it and other times he didn’t.He also needed an emergency infusion by mid-week.While getting his infusion, one of the counselors stayed with him and played games.Thank you Trent!You were amazing with Parker!Parker made it at camp all week.He made incredible friendships and he knows that he is not alone in his battle.He missed being there immediately.While at a family party the day we picked him up, he started to cry because he missed the people he met at camp.Thank you Boggy Creek for giving my son a gift like no other.
Parker's Cabin Group at Camp Boggy Creek
Last Friday night, the Make-a-Wish dream team came to our house.Another bitter sweet moment for us…Parker could not maintain the conversation.He had to go to bed because he had his Actemra (http://www.actemra.com/actemra/rheumatoid-arthritis.html) infusion that morning and it totally wiped him out.The 2 beautiful women who are Parker’s wish granters were so sweet and excited and it was fun to “dream” together.We will let you know what comes of his “wish”.
So again, I apologize for the length of this blog…I know that I should probably blog more frequently to avoid this.But honestly, this is so hard for me because I want to write about good things…who wants to only read about negative stuff…I know it can be draining, but imagine for a moment…”living” this.This is our reality.Life continues on all around us.We watch the hustle and bustle of folks’ day-to-day happenings.We continue with our daily tasks:work, meals, chores, and a little bit of fun here and there.Yes, even we have some fun.And then we have all the doctor appointments and we live at the pharmacy.Seriously, we are there 3-4 times a week.And then there are all the daunting tasks that still need to be attended to, all of which will take “time” in our hustle and bustle:physical therapy, dental, extra eye appointments, new eye glasses, and ortho appointment…oh wait, and 7th grade immunizations (but they can’t be live vaccines…).Can I just say, thank goodness that school is out for the summer!
Of course we also try to balance all this with fun stuff for Logan!He just finished row camp in prep for joining the high school crew team.He is really gifted at rowing and loves being on the river!So in spite of all the difficulties in our journey we have many gifts…two amazing boys with a fabulous relationship, new friendships (with our JA families), a new car (the van could no longer make the journeys to the hospital), and both boys made straight A’s.WOW!And then there are the beautiful flowers in our front yard …that remind me daily that the world is full of good....while their blooms stretch upward towards the shining sun and their supportive roots are planted firmly in the soil so they stand up strong…our family is standing up strong!