Update 9-27

Thank you all for your prayers during the last couple of weeks. Your calls and e-mails letting us know you love us and are praying for us are such an encouragement. Fred is doing well. His surgery was suppose to be two hours but it ended up being close to four. As the doctor told me "everything was  mess in there." Because of all the scar tissue and herniated disc that was "all over" the doctor said that there ended up being a tear in the dura, but he stitched up the dural tear real tight before there was any leaking cerebral spinal fluid. Because of the tear Fred had to either lay flat or stand up straight, no sitting for the first couple of days. Even so, it was a huge praise that there were no complications and no leakage of fluid b/c of the tear. It could have been a real set back.
  Fred is continuing to do well, he has a back brace that he wears when he gets up for more than a trip to the bathroom and he stays in bed most of the rest of the day getting up only to walk around the house for his exercise. Yesterday we took a quick outing to the christian book store and Barnes and Noble to look for Fred an audio book. But the 30 min excursion was too much and we realized he isn't quite up to all that yet.
  And on to Brian... His scan results from last week revealed that he has a lesion on his left femur. That changes his diagnosis from single system to multisystem. We do not know what this means as far as treatment as we have not met with the oncologist and don't until next week. What we did find out was that the lesion was there in April of 2010. The radiologist went back and looked at Brian's old scans from April of 2010 and saw why he missed the lesion. Apparently the image was not clear because Brian didn't sit still. Now, having the new images from last week, Sept 14 2011, and going back to compare to the April 2010 he was able to recognize and make out the lesion and determined that it is not new, it has been there and it has not changed in size. So many thoughts go through my mind when I hear that. Number one, honestly, a bit of frustration that they didn't get a good image in April of '10. If you remember those are the scans that helped make the determination that Brian was "good to go" and cleared to have his port removed after completing his first round of chemo. If you didn't get a good image, do it a second time!!!! Anyway, thought number two is "well, that explains why the almost immediate reccurrence. We never dealt with the disease complelety. It didn't 'come back' it was never gone." Thought number three would be that praise the Lord the lesion has not grown or spread in the last year and a half. That's a good sign.
  We will keep you updated as we learn more and move forward with Brian's treatment. Thank you for your continued prayers and love for our family.
 On a totally random side note, I have always like medical shows and the like. A month ago or so I was watching some of my episodes of Mystery Diagnosis that were recorded on my DVR. There is an episode titled The Lady that Saw Pink (Season 7 episode 8 originally aired Aug 17, 2009). One of the story's from that episode highlights a case of a little girl with LCH. I cannot even begin to describe to you what I was thinking and feeling as I watched a TV show called MYSTERY DIAGNOSIS that featured my child's illness. If you look it up and find it airing soon you should watch it. It really explains Brian's illness well.