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|