Saturday, June 20, 2009

So Much to Report!

It has been quite awhile since I last posted and so much has happened since then. The biggest news is that Amani started chemotherapy yesterday. He also had surgery to put in a port to make the process easier for him as his veins are small and very hard to get an IV into. We will be going to UCSF once a week for IV meds and have a number of pills and liquid medications we have to give him three times a day at home. His official diagnosis is LCH or Langerhans Cell Histiocytosis. It acts like a cancer, is treated like a cancer, but isn't a cancer. I haven't quite figured that one out yet. It is very rare. He has it on his scapula and his skull. It eats holes in the bone. The prognosis is very good - there is just a chance that it can become very chronic for awhile and need ongoing treatment. We are hoping to kick it the first time.

I will write more soon, but I will leave you with a few photos.