Update from Keith: June 4th, 2008

I apologize for not doing a better job of late at updating the blog. It is hard for me to do when Taylor's doing reasonably well, as she has lately. Writing for the blog brings me back to those timeless empty nights we spent at the hospital in January, February and March. It's a place in my mind I don't like to visit.

Today Taylor had surgery. It has been planned for some time. We knew that Taylor's NG tube had exceeded its expected life span (this was reinforced on Taylor's birthday, 5/23, when Kris could not get anything through the tube, brought her to the hospital and finally a dose of peroxide combined with shoving a metal wire through her tube opened it again). Thus, one of the things the doctor accomplished today was replacing Taylor's tube.

The other thing we wanted was to see if they could clean out her nose, mouth and throat of the prodigious amounts of mucus that haunt her without end. The doctor was able to clear one nostril, but not the other (T's left nostril is nearly closed with scar tissue and needs more extensive repair than is wise to undertake during chemotherapy). The doctor also scraped off her mouth and tongue; the latter of which smelled like violent death due to the hardened mucus deposits on top of it.

The surgery went very well. The doctor opined that Taylor will have difficulty speaking for some time because of sores on her tongue and possible neurological effects due to her chemo drugs (akin to causing her tongue to feel deadened and making it hard for Taylor to move it). Frankly, I think her speech has been much better of late and I understand much of what she says now; Kris comprehends even more.

We had wondered if Taylor's next chemo treatment (currently scheduled for Friday) could take place after the surgery so that we would not have to come back to the hospital at the end of the week. No luck. While Taylor's platelet counts were enough for surgery (the surgeon prefers at lest 60k, T's were 66k), they are not enough for chemo (oncology likes counts above 75k). Judging by the amount of blood still in her mouth following today's procedure, I'm not sure if she'll have enough platelets for chemo on Friday. I guess we'll see then.

We've mapped out Taylor's planned chemo cycles and the current schedule has her last chemo delivery on Halloween. It seems so far away. it is.

This upcoming chemo cycle marks a new phase. Taylor will get weekly doses of Vincristine for the next 6 weeks, beginning Friday. They did that back when she first started her chemo and it was not particularly enjoyable. It's hard to say if that was from Vincristine, though, or from the daily radiation. I'm not looking forward to this 6 week regimen. It will be nice when it is over.
The last few weeks have been great. She had her birthday on 5/23. It was only 7 days post-chemo, so we just celebrated at home with family. The following week we had a party at Chuck E. Cheese that Taylor loved. Most of her friends were there and I think she enjoyed being a regular kid again. If only for a few hours.

She is going to spend some time at Mayfield tomorrow with her class. The last time she visited, she absolutely loved it. I think tomorrow will be great, too.

I almost forgot the best by-product of her surgery. Taylor lost 2 teeth! Her bottom, center teeth have been loose for some time, although we did not realize it until the day before her surgery when the doctor pointed it out. During her surgery he extracted them so that their falling out would not cause a problem. The tooth fairy will undoubtedly visit tonight. She is very excited. Another chance to be a regular kid.

Lately, the last 10 days or so of her three week chemo cycle have been great. She's been active, engaged, and happy during those times. We now try to schedule things so that she can take advantage of those times to do fun things, see friends, etc. I hope the weekly Vincristine doses don't change this.

Of course, things aren't all rosy. She still throws up a lot (especially at night) and struggles with the problems in her mouth. Her walking remains greatly affected, although even that has improved. Regardless, she is much better than she was 3 months ago. I hope the same is true 3 months from now.

I'll try to be better about updates. She'll get chemo on Friday so we'll probably do an update at the end of the weekend, or early next week. Thanks as always for your love, your help, and your prayers. We can never thank everyone enough or begin to repay all we've received. Nonetheless, we appreciate it all the more.