New information to report on Mark comes primarily from Dr Cheryl Coffin @ Vanderbilt. The report is full of $5 words and most seem to point away from malignancy and more toward autoimmune related disease.
Wednesday, January 6, 2010
What is absent in the report is any definitive diagnosis. Here is a capsule of what she reports: (1) "Soft tissue, biopsy of intraabdominal mass slide" shows chronic inflammation and Fibrosis. (2) "Liver, biopsy #1and #2" shows Lobular disarray with hepatocellular swelling and focal mixed portal triaditis" again with chronic inflammation.
The report goes on to say that the same chronic inflammation is found in the peritoneum, omentum, and small bowel along with attendant fibrosis.
What is missing: "definitive neoplasm" specific malignancies. The lymph node biopsy shows reactive lymphoid hyperplasia and "several poorly-formed granulomas" and she suggests that it may be useful to perform additional stains for organisms.
Dr. Coffin points toward " IG4 disease, dissorders and autoimmune and rheumatologic dissorders.
Though no specific diagnosis has been made, there are threads that can be followed and the "Child Care Team conference" will convene tomorrow and will include team members from Infectious Disease, Oncology, Surgery, Gastrointestinal, Hematology, Rheumatology and others. Their charge will be to identify differentials and commonalities and devise an agenda for new tests and formulate treatment protocols.
Mark had the misfortune of becoming critically ill during the holiday season when so many top-tier docs were away. Now they are back in the shop and suiting up for work. There is no magic doc out there with all the answers and this rare illness will not be solved easily. They will have to solve this through hard work which will include detailed research.
Meanwhile. Mark continues to suffer side-effects from meds and prolonged hospitalization; things like delirium tremors and restless agitation. He has periods of alertness alternating with what looks like teenage fog. He misses his brothers and is emotional.
Mark had his 15 or so staples pulled today and he was agitated from that but seemed to be more comfortable after the procedure was finished. I felt better myself after they finished that up. Mark and I share more than hats it seems; we belong to the brotherhood of tummy zippers.
Love to all followers and supporters of the Jeanes family Klan.
Posted by kennethcrocheron at 5:36 PM