Update from Kristin: April 4th, 2008

We are back at the hospital for Taylor's fourth cycle of chemo. It broke all of our hearts to come back here, especially Taylor's! The last few days had been pretty good ones. Her spirits improved a great deal. She spent most of her days out of bed. She wasn't overly active, but it really lifted her spirits to get up and move around.

The preschool she had attended, Our School, brought over a wagon spilling with toys (many thanks to everyone for that!!) and she spent a good deal of time going through it each day and picking out activities. She and Charlie painted dinosaurs, fought over Transformers, and looked through books together. We even had a chance to dye Easter eggs, which we weren't able to do last week because we were in the hospital.

There is always a constant reminder that she is a new and different Taylor and probably will be forever, but for the first time in months we saw her singing and dancing and laughing at jokes. She is still fighting a pretty rough battle with the mucous and she still needs help getting up and down the stairs but she is now able to hold her head up and has been willing to get out of bed and give a few things a try.

She has been begging to go miniature golfing - thank heaven for the rain because I have a feeling that might be a little more activity than she can handle yet.

We all noticed that she wasn't walking quite right on Wednesday. One of the side effects of the weekly chemo that she gets, Vincristine, can cause children to drop their feet when they walk. This has something to do with the nerves and stopping the drug for a period of time usually corrects the problem, so the doctor has decided to hold that drug for at least this week until it corrects itself. She has also had a drooping eyelid on the right side and the doctor isn't certain if it is also from the Vincristine or from the radiation, or if it is damage from the tumor.

The pain in her head seems to be easing a bit. I am not certain if that is because it is actually getting better or if just being home and out of bed and not thinking about it all of the time makes it less of an issue. She is on a four hour cycle for her pain medication, oxycodone, and the last two hours were always a little rough but lately I have not noticed her grimacing and holding her head as often during that last two hours, even while here at the hospital. Maybe it is wishful thinking but nothing would make me happier than not having to watch her live in constant pain!

The next week or two will probably be rough. The actinomycin-d isonce is once again included in the chemo protocol now that the radiation is complete. It is a pretty harsh drug and can also cause "radiation rebound." Since the damage and pain from the radiation are stillc ausing problems, I can only imagine what she will be forced to endure. She is also expected to have more nausea and more severe neutropenia than the last two cycles which did not include the actinomycin. Considering that during last cycle she got pneumonia and a sinus infection, this could get ugly again. We are told that we could be out of the hospital as early as tomorrow, but that seems optomistic. It would be great but seems very unlikely. The last two times that she has had chemo, she has also spiked a fever the following day, so maybe going home too quickly would only result in a night spent in the emergency room!

We will try to keep everyone updated but please continue to think good thoughts and pray for Taylor!