Grace had her short infusion day on Friday. She showed anxiety, even with the VR glasses, but got through it. She was able to say that it was too different getting accessed in a chair than on a bed. This was her first time on the infusion room floor rather than isolation in about 3 months due to successive colds associated with her immune suppression from prednisone. The past 3 weeks Grace has had increasing symptoms that cannot be explained--stark reduction in appetite, continued constipation, feeling that she needs to throw up but nothing comes up, feeling that there is something inside her crawling up her neck into her mouth and into her ear, itchy skin, more face rash, more moody, more fatigued, softer more nasal voice. When the symptoms first start one thinks "hmmmm....." but now that they are so prevalent I am certain the disease is trying to flare. JM is a disease that simmers. If its not knocked out then it just keeps trying to find a way to exert itself. Her rheumy referred her to GI at Childrens but the first available appt. is 8/20--too far away. Her rheumy will be trying to get her in within the next 2 weeks for a consult with GI. The labs that were available on Friday showed slight elevations. Won't get the NK cells report until Monday but last week the NK cells had dropped from a high of 390 to 97 (normal is 161+). Aldolase is the most predictive of her labs, but only in trailing fashion. It had been edging up again to 6. We won't know the latest report until Thursday. So. Pins and Needles again. Those of you who have been following Grace on her see-saw must know the frustration this disease is. We all just want it to be positive, positive, positive; not 2 steps forward and 1 back. I cannot tell you how frustrated I am. We need a CURE for jm NOT these hit-and-miss treatments! Arghhhhhh.
|
