1. Anxiously waiting
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2. The IV, includes screaming and lots of stress for all involved
3. Exhaustion
The infusion is no fun, Emily hates being back in the hospital even for a few hours, she hates the IV and let's face it those hurt, she is always asking about when the next one is and how long till it happens. "How many days till my fusion?" is the big question on this sweet girls mind. It seems to be working so far, other then being tired a lot there is no rash or fever present so we are happy about that. We also talk about how she has no more shots. Since the Kineret burned so much we try to tell her how this is so much better the infusion is, but I don't know that helps much. Nothing about this nasty disease is pleasant.
Dear AJ, my name is Trisha and I am a mother of a child who was diagnosed with SOJIA in November 2011. He was considered a sever case and at one time his labs were trending towards MAS. We started him on high doses of prednisone and were unable to ween him for quit some time, we then went to infusions of Methylprednisone and Actemra. I'm not going to say it is the cure all but I will say after 7 months he is in remission and 6 weeks without any infusions. I hope and pray for Emily to see this day. It may take a few infusions for you to really see the signs of progress but it will come. You can visit Hunters blog at caringbridge.org/visit/hunterw I hope it helps. Thoughtfully yours, Trisha & Hunter
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