Message from Keith: January 30th, 2008

Yesterday was a hard day for Taylor. Periodic vomiting from Monday's chemotherapy was the order of the day. Taylor would wake every 2-3hours and have to go the bathroom (her chemo drugs can have nasty effects on the bladder, so they over hydrate her so she will urinate frequently enough to keep the drugs from staying in her bladder). Each bathroom trip was accompanied by vomiting.

Oddly, Taylor did not seem too affected by the constant nausea. No crying at all. It's terrible to watch as a parent, but T was a trooper. After she finished throwing up and going to the bathroom, she'd lapse back into sleep.

Until today, Taylor had essentially been asleep since her chemo treatment on Monday afternoon. She has been so sedated that one of her doctors grew concerned and decided to diminish the amount of morphine she has been getting. Kris and I were torn about this. I wanted T to be more alert, Kris wanted to spare her the pain. Because I was in France for a week earlier in the month and out of town right before T finally went to the hospital, I haven't been with her through her awful head pain as Kristin has for 3 weeks. Not surprisingly, she is far more sensitive to Taylor's pain than I, and far more concerned about alleviating it. In the end, we decided to lower her morphine dose with the hope that it would result in her becoming more alert.

It was a tough day for Kristin yesterday. Taylor's heavy sedation, her pain and her frequent vomiting was almost too much for either of us to bear. I kicked Kristin out at 1:30 which turned out to be great. For the first time since Taylor came to the hospital on 1/22, Kris was able to pick up Charlie at day care. That was a wonderful moment for both of them. On the way home, Kris took Charlie for a drive through our neighborhood which is something both of the kids love to do. It was one of those moments, though, that emphasized Taylor's absence and Kristin cried.

Overall, yesterday's early homecoming turned out to be a good thing for Kris. She was able to spend plenty of time with Charlie which was important for both of them. Brooke, our sister-in-law, came over and they watched something on TV, while Charles kept sneaking down after his bedtime to be with his Mom. She also got 7+ hours of sleep.

I didn't sleep much here at the hospital last night. I didn't want to be asleep if T needed me to help her to the bathroom or bring her the bucket for her vomiting. She was up every 2 hours or so to do both of those things.

This morning we went down to the radiation oncology office for the first time. Taylor had to be scanned and fitted for various devices that assist in irradiating her tumor. To do this, she needed complete sedation so an anesthesiologist was there to put her out. They also had to give her a breathing tube because of the airway obstruction from the tumor. The radiation oncologist shared the detailed CT pictures he took this morning and showed us each feature. For the first time, I have a good idea of where her tumor is. It is essentially behind her nose, resting on the roof of her mouth. As it has moved back in her head, it has grown downwards so that once it clears her soft palate, it goes down and blocks her airway. The tumor is much further below her eyes than I originally thought. It's also a lot bigger than I thought. It was hard to see that evil mass inside my daughter.

Taylor was extremely grumpy after waking up from the anesthesia. We got back upstairs and she got to see Kristin's dad who flew in from his home in Vegas. She was happy to see her Papa, even if she was still grumpy from the morning's events. Beginning at 2:00 or so, Taylor has been awake. This is the first extended period of wakefulness she has had in over 48 hours. Her vomiting has subsided, although not entirely. Her O2 saturation has been great the last 24 hours after a troubling time on Monday. She is watching one of the Star Wars movies and is much less grumpy. She even ate half a popsicle after some effective cajoling by the peds resident.

We feel like her speech, which has been affected for a month by her tumor (of course, we thought it was a cold for most of that time) has improved today. We might just be reaching for any hopeful sign even if it is just our imaginations, but it makes us feel better, anyway. We are encouraged that she is staying awake longer and hoping that we can be discharged on Friday. Of course, her pain, airway, and nausea all must be under control for that to happen. Plus, we'll be back here at 8:45 every morning next week for doses of radiation (all of which must be administered under anesthesia), so it is not as if we will be leaving this place for long. Still, I yearn to have our whole family back under one roof. I think Charlie, Taylor, and Kris do too.