Spoke with Dr. Larson on Tues, Nov 13 at about 6pm. I had called to check on a diagnosis of HGL. Kristen was doing well after the tests but had a severe neck pain on her left side. Dr. Larson did not have great news and again my heart and soul were tormented beyond any imagination. Kristen liver was smaller but still showed lymphoma. I also learnt for the first time that the lymphoma in the bone marrow was still present. This was a real shock since I had felt and believed that the cancer was never present in that region. The first 2 bone marrows were negative, but the marrow after the splenectomy was tainted.
Dr.Larson said that the chemo for 11/17 was being canceled and that he was going to try and gather resources to re-determine a protocol. Some comments were higher dosages or visits elsewhere. I still have confidence in CHAD but I am certainly whacked by this weak news and lack of an immediate response to Kristen's condition. I also asked Larson to see if he could contact Osband. Osband remains unreachable. I'm really angry with him because of his lack of feelings for Kristen and my family. I really want to report his behavior to someone, perhaps the AMA. I also made some contacts with Boston Children's Hospital and if Larson can't contact Osband I'm going to institute a new second opinion search this Monday.
Being more specific on the test results. Larson stated the results were not as good as we expected. I expected to see it gone, although it has not spread. It is acting more like an adult than a pediatric lymphoma. I did not realize that a complete eradication was expected during the first third of the chemotherapy. I have never felt so empty, alone, and helpless. I need to maintain control for Kristen's sake and my sake. Patty as always is a saint and a comfort although I detect her nerves are getting frazzled.