MSI Press Blog

  I have raised two children who were not supposed to live because of the type of birth defects they have. Today, both are in their 40s. I know how to care for someone whom I honestly believe will -- and who does have a hope to -- get better. There was always the struggle of making sure they got the meds they needed, that they did the kinds of activities they needed to do, that their father, Carl, and I researched everything that was going on in medical research about their defects and brought it up to their doctors, and that we interacted actively with all specialists working with them, asking for clarification for us at time and for them at times, ensuring that they knew as much or more than we did. It was purposeful care that had an expected point of diminishing need, with the reins turned over to the children as time passed. Time, then, was a positive. It allowed us to build a brighter future than an initial diagnosis proposed. Things got better over time. The kids gained skills an

  The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options: let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice , it was still the best choice) try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might no