We arrived late Thursday night, indeed to a flurry of activity and didn't get to settle down for some rest until about 3:30 a.m. The doctor reviewed all her records, set them aside, and looked at her. That was interesting in itself because I was out of the room for a moment when he arrived and when he saw me coming he motioned me away. He stayed in with Kinsey for a long time before talking to me. She was great with him and she later told me, "I thought he must be Dr. Margolis when he came in, and I knew he wanted to see you, but he didn't. He wanted to see me!" Within minutes of examining her he told me he just didn't think the mouth accounted for all the fevers and other issues. He said he thought there might be a fungal infection hiding somewhere. He ordered a complete body scan for Friday morning and within hours, he was back with two other doctors and films. My heart started pounding. Kinsey was busy with her laptop and we sat in a sitting area part of the room. He put the films up on the window and said, "These are her lungs. Black is good. White is bad." And he proceeded to point out all the white spots, which he believes are a fungal infection, probably a mold, probably aspergillus—the mold that one of the ABQ doctors said we didn't really have there. He's not sure what it is, however, and says it could be "something weird." The only way to tell for sure is a lung biopsy which is tentatively scheduled for tomorrow. They will do another lung CAT scan in the morning. If the spots are better (which no one expects) they will not do the surgery. If they are worse or the same, they will go with it. The lung surgeon will determine for sure if he can do the procedure with a scope (less risky, smaller incision in the chest). If he cannot do it safely in her condition, it will be called off and they will go with their assumption, an assumption based on some solid evidence as opposed to "Obviously she doesn't have a fungal infection since we found surface bacteria in her mouth, so why bother doing a scan? In fact let's recommend she be taken off her anti-fungal medication and be treated out-patient with antibiotics alone."
Bottom line: this was pretty much the worse case scenario we could have possibly anticipated. I started to cry. I couldn't stop. It was quiet crying and Kinsey couldn't see me at first. I managed to ask a few quiet questions, but I couldn't stop crying. Dr. Margolis said, "I need to say this to you: I still think we can beat this." He added, though, that with this picture of things now, "All bets are off as far as survival odds." He also told me we would probably be looking at a bone marrow transplant sooner rather than later and that I would probably be the donor. Nothing is certain yet. Things are not looking good. More tomorrow. Ann and Audrey and Jillian just arrived and are waiting in the lobby. Keep praying....
| Previous | Next |