Well - not so fast on the good news.
After reviewing the scan, the legions are still visible which concerns Dr. McClain at Texas Children's Hospital. Dr McClain is the leading expert on this disease and he has some concern that it should be all gone by now.
So the next steps are to do an ultrasound and see if we can see the legions on his liver. If we can, then we can do a biopsy and see if that is a disease state or scarring.
So we went in for the ultrasound at 11:00 today (under 2 hour from DR. request to scan - amazing) and the DRs were able to see the legions which is good. They think they can biopsy the legion without issue. So the biopsy is to be scheduled for November 19th or 20th after we get back from Australia.
So from there, if it's in a No Active Disease state - great -
But if it's still active, we need to figure out the best treatment action - either continue with current treatments for another period of time, or move to other drugs..
We're not sure here, but will have more info in November after the biopsy.
About Cole Kambeitz
- Holly Kambeitz
- Cole Jonathan Kambeitz was born October 5th, 2008. He was born with chicken pox-like lesions on his skin. After a CT scan, MRI, x-ray, ultrasound, and a biopsy, he was diagnosed with Langerhans Cell Hystiocytosis (LCH) at 3 days old. It affects his skin, liver and lungs. He completed treatment of 1 year of chemo and steroids and after a liver biopsy in late November '09 confirming no active disease, he is officially in remission. Today he is a very happy boy, excited to explore the world.
Subscribe to:
Post Comments (Atom)
1 comment:
Hi guys. So sorry to hear that the little guy has to under go more tests, etc. We will pray for his health and good news in November. Love you!
Post a Comment