Friday Update

We survived the rest of the week but just barely. Josh did end up staying home from school on Wednesday. He still had a fever when he woke up in the morning, and he was coughing. He and Katie both stayed with their grandparents, and they enjoyed the day. Katie was animated and energetic, and the sores were improving. We thought we were making progress...but we were also distracted by other commitments. This week was midterm exam week at school, and Amy and I have been very busy.

Thursday found us in Burlington. Katie had an appointment with Dr. Bradeen and crew at Fletcher Allen, and she met an infectious disease specialist. We hoped he would be able to identify this thing that Katie is fighting. Unfortunately, we still don't know what caused the sores, and her ANC remains very low. The sores on her face have cleared up for the most part but her lips are still quite sore and the focus of a lot of attention. Her energy levels ebb and flow from day to day but that may be based more on how well she sleeps the night before than on anything else. She has a lot of nightmares now, and she wakes up at least once every night crying out about something she is afraid of at the hospital. Last night it was the finger pick.

Another bone marrow extraction has been scheduled for this coming Monday, 1/19/09. The doctors are still edgy about the possible causes of the absence of neutrophils, so they want to compare this next bone marrow sample to the last one to see how things have changed in the last couple of weeks. They also want to send another sample off to John Hopkins for a more detailed inspection, which of course means they are still looking for signs of cancer. The roller coaster emotional ride never seems to end.

To top things off, my mom called school late this afternoon as Amy was working on some grades. Katie had a fever. We went home for an ear thermometer and changes of clothing. We were convinced that the other shoe was about to drop. It was a tense and quiet ride to Newport. As it turns out, the fever was gone by the time we arrived, and Katie provided the clue we needed to determine what had caused her temperature to rise. She told us that she had had a headache and that she and Grandma had fixed it with some juice. Our old friend blood sugar. Grrrr. The good news is that we are home for now and have some time to wrap up grades before making the trip on Monday, which is a vacation day. It is a relief to end the night at home and not in the ER.