My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Saturday, August 20, 2011

The Sloan Sibling's Summer Buzz

Jake & Hannah at Camp Boggy Creek
We started our summer off by celebrating Hannah's 7th birthday.  By her turning 7 meant that she was eligible to be a camper at Camp Boggy Creek.  Needless to say- Hannah's bags were packed and she was ready for a week at Camp Boggy.  Walking away from Jake and Hannah at camp in the care of complete strangers was one of the hardest things I have done.  Even the best of the best nurses and Ped. Rheumatologists at camp, it was not ME! Neither of the kids had been feeling well days prior to camp, so naturally I was worried.  I reminded myself everyday that Camp Boggy Creek was designed  for chronically ill children and  to provide a experience for the kids to forget what they have and simply be a kid. I wanted that more than anything- so I survived a week without Jake and Hannah.   I was anxious to pick up my darlings and they were WORN OUT, but had the time of their lives! They can't wait to do it again next summer and hope our entire family will be back in September for Family JA Weekend.
Hannah & Jake both getting 1st dose of Actemra
In between camp and a week at the beach, Jake and Hannah started their  first treatment of Actemra- the first biologic approved for systemic JA.   It is always stressful switching medications and wondering if this is the right decision.  It's easy to feel discouraged, but we strive to remain positive and hope Actemra is the medication to help Jake and Hannah fight this battle!   Following infusion day, we repacked our bags and flew out to Washington DC for the annual JA Conference.  The Florida Chapter Arthritis Foundation had sent 12 families to this conference.  It is always such an amazing experience to be surrounded by 1,000+ people who all "get it". I spent several days listening carefully to presenters from across the US to share the very latest in treatments of JRA, sharing my story with others, and consulting with a few of the best pediatric rheumatologists in the country.  I feel assured that we are doing everything we can to help Jake and Hannah slow down the progression of this disease.  I like to know what's ahead and be prepared for the next steps.   I am concerned and scared that there is NOT anything past Actemra.  Our option will be to be part of a clinical study.  (I'm not sure how I feel about letting my children being the ones to test it out..... We'll cross that bridge when we get there.)
Even more reasons why we all need to speak to our local Congressman and let them know arthritis is not ok! We can't possibly accept that it's ok to cut research dollars which will result in  fewer opportunities for new biologic medications. I don't want to let go of my dream....FINDING A CURE for ARTHRITIS!  Spending those few days in Washington DC was the BEST! Jake and Hannah were able to reconnect with JRA buddies and be assured that are not alone with living with JRA.  Hannah asked me almost everyday, Mommy, why are our JRA friends like our best friends?"
Family Night at JA Conference in Washington DC      
Jake and Hannah's favorite part of summer was spending a month with Grandma and Grandpa in TN.  I don't know if it was the 4-wheelers, good country air or the love from Grandparents, but I almost began to wonder why we are going to Shands every 14 days for infusions??  Jake did amazing in TN and it really gave us  hope that Actemra may just be what he needed for some much needed relief! Hannah did not feel as well as Jake, but being pampered from Mommy and Grandma wasn't so bad either! 

I feel like we just got home and summer is over. Our family is ready to begin our newest adventure--- Homeschooling. For MANY reasons, we have decided to try something new in hopes it will be better for Jake and Hannah.  They are both super excited and don't have any reservations about missing happenings at LCS. The flexibility and being able to work around medical appointments, infusions (every 14 days),  flare up's and illnesses is just one of the advantages of homeschooling.  We are beyond fortunate to have been placed with the most amazing Hospital Homebound teacher, Miss Nancy.  I will NEVER have to explain anything, she has lived with arthritis as a young child herself and battled the disease as well as lymphoma several times.  She understands being nauseous a few days after Methotrexate shots, and the hyper moods after bursts of steroids,  the lack of concentration during a flare and the sudden fevers and quick illness onsets.   I am looking forward to this new Homeschool adventure and praying Jake and Hannah will benefit from the Hospital Homebound program.

The Sloan Siblings Raising their Hands Against Arthritis!