The second most frustrating and emotionally draining aspect of all this is the lack of input from the doctors as to how Kristen's medical condition actually is. When you try to pin down answers the responses are vague. This, because of a parents love for their child, is the ultimate psychological torture. I am going to press for more concrete info and what type of tests are being used or considered to track her case. Nov 9th up to this point I have tried to contact Dr. Osband at least 10 times to get the info he promised us in our Mass General meeting. He has been unavailable and has not returned calls. I don't know if I should report his behavior to the Medical Board or write him a nasty registered letter. Kristen's medical needs cause enough concern without this type of horrendous behavior on the part of Osband. Any parent would want their child to have a second opinion, especially with this rare lymphoma. On Monday I plan on calling the Jimmy Fund or Sloan-Kittering to see if they can help. I want help. I want to note two things one; I hope Healthsource hasn't paid Osband and two the ACS has not been much help.
Kristen had a CAT scan, blood work, and echocardiogram at DHMC. As usual the people were great, especially the technicians. Friday she will have a liver biopsy to see her progress. The doctor is Susan Edwards. The lack of prognosis is nerve racking but Kris looks great and has been doing well.