|2012 JA Conference|
|Happy Campers at Camp Boggy|
Back to Fall was a simple transition.... no stress on changing physicians or getting to know new community or finding a new church home. We are continuing homeschooling Jake and Hannah through Polk County Hospital Homebound program. It has really worked great for our family and appreciate the time and effort our assigned h/h teacher has provided for Jake and Hannah. Hannah has really flourished in 2nd grade and Jake continues to LOVE to learn. They are a joy to homeschool and I wouldn't want it any other way.
We are disappointed to share that Jake and Hannah both are finishing up their final infusions of Actemra. They both have been getting Actemra infusions every 14 days for the past 15 months. It has not been a perfect drug, never experienced remission or close to it, but did certainly help to manage their disease in some ways, along with other modalities of treatment. We have tweaked it as much as possible, adding second Biologics (Enbrel), joint injections, maximizing dosages, and increasing steroids. We have been told....Actemra has lost it's effectiveness after antibodies built up and it simply is no longer effective for Jake and Hannah. I knew this in my heart..... Jake's fevers have returned almost every evening. Jake and Hannah both have inflammation in many joints ( toes/knees/wrists/fingers/chest/ ankles). I often hear complaints about achy hips, shoulders, backs,jaws and NECKS! Last month was a hard day.....while both kids getting infusion, MD shares they have both failed Actemra and it was time to move on and try something else ??
|Actemra infusions coming to an end.. wish there was more drug options.|
|Hannah's impetigo spots.|
Due to the recent outbreak of meningitis linked from steroid injections, I'm going to hold off on any joint injections for Jake and Hannah. Dr. S asked if we could use ultra sound and maybe inject joints that are needed next visit. I'm going to wait--- don't need that extra worry right now. Jake is scheduled to have his jaws re-injected in about 2 months. We aren't using steroids this time, going to try something new, Remicade.
|So as I process this crazy disease that doesn't stop, I remind myself, it will all be ok.|