My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Saturday, June 18, 2011

New Drug & New HOPE for the Sloan Siblings

  Finally.... the day has come where FDA has approved the first therapy for children with Systemic Juvenile Rheumatoid Arthritis.  April 20, 2011, The U.S. Food and Drug Administration  has approved the NEW biologic drug- Actemra or tocilizumab.   Actemra's approval for this drug comes after a study of  only 112 Systemic JRA children between ages 2 and 17. Eighty five percent of those children  who got Actemra had at least 30 percent improvement. It may not sound too exciting, but as a parent who now has TWO children who have Systemic JRA-- It is better news to know there is possibly HOPE!

I often struggle with to share or not to share our JRA journey.  I'd like to put make up on, get dolled up and walk out the door like "Life is Good".  But for the Sloan family that is far from the truth. Although, Jake and Hannah may look  great and may certainly not act sick........ Let me say simply..we have MANY stories behind those smiles!  The stories are what I choose to keep personal for the most part.  Do you really want to know my husband came home this week , unable to talk and was gagging until he threw up. Yes- the news that our son, Jake , is also SYSTEMIC just like our daughter, Hannah.  And that we are now going to TRY another NEW drug that only 112 children tried! 

Trying to get excited about the opportunity for  Jake and Hannah to both get their first Actemra infusion on July 5, 2011. Actemra is the first drug to block the inflammatory cytokine IL-6 or interleukin-6, which also plays a key role in driving the inflammatory process. It is administered as an infusion- every 14 days and preferably in combination with Methotrexate.  Jake is currently taking Methotrexate , but we choose to discontinue it for Hannah about 2 years ago. ( Hannah was unable to tolerate it regardless of how much we lowered the dosages, added leucouorin and Zofran, ect....)  So the thought of Hannah & Jake both on MTX ...  let's just say it literally makes me sick!  Side affects of Actemra appear to be very similar with the current Biologic's that Jake and Hannah have been taking ( Enbrel, Remicade, Oriencia). I guess we can deal with extra colds, upper respiratory infections, headaches, sore throat, congestion, and diarrhea.  But what I  HOPE does not occur is the potentially deadly condition known as MAS (macrophage Activation Syndrome).  MAS is a complication of systemic inflammatory disorders in children like Jake & Hannah that involves overactive immune cells  and can lead to "trouble" very quickly! This is always my fear when Hannah gets sick, and now my new worries for Jake. MAS worries me more than the increased cancer risks! Always HOPING & PRAYING for the BEST as we make decisions for Jake & Hannah! 

Monday- I am sending Jake & Hannah to Camp Boggy for 6 days in hopes they will have the opportunity to "forget what they have and feel normal."  They are so excited to go away and be surrounded by kids who all understand and can relate to life- the Sloan Siblings Life! I trust the staff and medical volunteers to take care of my children and all the others who also suffer from JRA.  When they return-- we will take the next step at the Swamp and start our initial Actemra infusion. With HOPE this new drug may be answers to some relief for Jake & Hannah. Then we will re pack our bags to fly out to Washington DC for the JA Conference.
Hannah & Jake
Bobby and I are holding on to HOPE that Actemra may help Jake & Hannah.  We appreciate those families and individuals who are continually praying for our children and family.

Thursday, June 9, 2011

Sloan Siblings Stomping Out JRA!

 Sloan Siblings 2011 Team

The past few months were long, busy days as we prepared for Lakeland's arthritis walk.  But as May 7 came-- it was worth every effort we each put into the 2011 "Let's Move Together Arthritis Walk".  I am so proud of Jake & Hannah for helping to recruit friends from school, church, dance classes and family.  The Sloan Siblings team was the largest team and raised over $7,000.  A special Thanks to Law Offices of Burnetti, P.A. and The Sports Section for sponsoring Jake and Hannah and providing all our team walkers with shirts.  It was incredible to look around and see all the yellow shirts supporting the "Sloan Siblings". It was one of Jake and Hannah's best days! Our family was humbled at the support that was given to Jake and Hannah.

Arthritis has not only affected our family, but has also affected 46 million Americans, including 300,000 children. Arthritis is the #1 leading cause of disability in the USA.   Did you know that 1 in 3 Floridians are living with at least 1 of the 100 types of arthritis, and it is life-threatening in many cases?  The generous donations made by family and friends will be used to help further the mission of the Arthritis Foundation which is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.  Eighty three percent of every dollar goes directly into research.  Without the support from family and friends- we would not be able to hold on to hope that better treatment options will be available for adults and children suffering from arthritis and related auto-immune diseases.

It was my pleasure to serve as Lakeland's walk chair and work under the leadership of Tony Ward- Community Development Director of Central Florida. I am most proud of our Lakeland walk committee. Each and every person contributed in some way or another. It is difficult to do the extra things when we are struggling to take care of ourselves or children who have chronic health conditions as well. But the Lakeland walk committee did it!! We pulled together and it was the BEST walk ever!! Each committee member  touched my heart and with their support made 2011 Arthritis Walk successful in Lakeland, Fl.