My Story

Hi everyone!  My name is Ben and I was diagnosed with juvenille rheumatoid arthritis when I was just 4.  I developed an auto immune disorder called HLH(Hemophagocytic lymphohistiocytosis) in March of 2008. I had 8 weeks of chemo.  I'm doing good.  Please read all about my journey.

Journal

Thursday, July 2, 2009 10:08 AM, CDT


I posted an update earlier this week and I must of hit a wrong button because it's not here.  Anyway, Ben had his infusions done on Monday after he got done with summer school.  His blood work is looking about the same.  Nothing bad to worry about.  Dr Verbsky increased his Orencia a little to see if we can get Ben over this lastest flare that he has.  The spots of rash are not completely gone and we went to see the dermatologist and they wanted to do a skin biospy.  Ben started to cry and I was not too keen on the idea either.  After explaining everything Ben agreed to let them do it.  He was fine until they poked him to numb him and he screamed, something he doesn't usually do.  He cried and it made me want to cry too.  He has 2 tiny stitches on his back and we should know the results in about a week.
Only 25 more days before Jessica has her hip surgery.  Took her for blood the other day and she had a pretty severe anxiety attack.  She got sick right after the bloodwork was all done and looked like she was going to pass out.  I hope she does better when the day of the surgery gets here.

Have a great 4th everyone!!!

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HOSPITAL INFORMATION

Children's Hospital of Wisconsin
9000 W. Wisconsin Avenue
Milwaukee, WI 53201-1997
United States