Wednesday, November 05, 2003

More details from the beginning

Wow! Thanks so much to all of you who took the time (and I realize it took a LOT of time!) to read the first entry in Kendrie's journal and respond so positively, and especially to those of you who signed her guestbook. I had no idea the responses would be so comforting to me, but they certainly are. The only negative comment I received was from Blaine! His words were (and I quote) "geez, it's nine thousand pages long and I'm at work, honey, it will have to wait until later!" What a dork.

Several of you have asked, and the answer is yes, it is fine with me if you pass her website address on to people you know, and also those who are praying for us. The more prayers the better! Please encourage even those people who don't know us to sign the guestbook, and if you've already signed, please sign again when you get a chance.

We are preparing to go to Atlanta tomorrow for Kendrie's Day 21 outpatient treatment at the clinic. It consists of accessing her port to draw blood (to check her counts) and to administer the chemo drug vincristine. Blaine is taking the afternoon off to go with us, which is great. This will be his first (and probably last for a while) chance to attend a visit, since my mom is still here and can pick Brayden and Kellen up from school. He and I also plan to visit with the doctor about the CCG/COG (Children's Cancer/Oncology Group) Protocol 1991 clinical trial study they are offering Kendrie the opportunity to take part in. We need to decide whether to give permission for the four-arm study, which is randomized, or keep her on the standard therapy. There are pros and cons to both, so we are hoping to talk to the doctor, pray about it tonight, and hope the right answer comes clearly to us. For now, we are leaning towards taking part in the trial.

I completely jinxed myself by saying we had the oral meds under control! I had requested a pill form of her antibiotic since she hated the liquid and because she had been taking the pill form of steroid so well. The antibiotic pill was freakin' HUGE!!! Like, the size of my head! I had to cut it into fourths just to get it in the pill crusher and when I was done crushing it all, Kendrie took one look at the mountain of white powder and burst into tears. So tomorrow, back to the drawing board, trying to find a medication that we can get down her without inciting WWIII.

The past three days have been very surreal. She seems to be responding to the steroids a bit more, which is a little depressing to witness. I'm glad to know personality alterations are temporary. (Most of the people I know who need permanent personality alterations are adults!!!) She has simply laid in bed, staring at the wall, without speaking, except to get up and eat. She is DEFINITELY eating more --- or more correctly, grazing more. Last night she slept until 5am, then got up and had cheese nips, potato chips, a grilled cheese sandwich, a bowl of oatmeal and a glass of chocolate milk, all in less than an hour. What is frustrating, though, is that she doesn't eat *all* of anything. She asks for it, we fix it, she takes three or four bites, announces she is done, then thirty minutes later is hungry again. Or, worse, she is hungry but can't decide what she wants. She and Blaine had the following conversation tonight, verbatim:

Kendrie, "I'm hungry"
Blaine, "What would you like to eat?"
Kendrie, no response.
Blaine, "Would you like macaroni & cheese?"
Kendrie, shakes head.
"chicken noodle soup?" shakes head. "bagel bites?" shakes head "oatmeal?" shakes head "chicken nuggets?" shakes head "toast?" shakes head "a breakfast bar?" shakes head "yogurt?" shakes head "pudding?" shakes head "pb&j?" sheakes head "lunchable?" shakes head "applesauce?" shakes head "grilled cheese sandwich?" shakes head "cereal?" shakes head "crackers?" shakes head "raviolios" shakes head "mashed potatoes?" shakes head "hot dog?" shakes head "bagel?" shakes head "ham?" shakes head ......... you get the picture (and bear in mind this conversation took place AFTER he made a special trip to Kroger at 8pm to buy her Cocoa Krispies cereal.) Finally, Blaine gave up and told her he couldn't help her, at which point she burst into tears and cried for ten solid minutes. Hmmmmm. I'm going to assume it's the steroids, or she's REALLY playing us!

Well, in an effort to curb my always flapping mouth, I'll end this for now. I'll try to update tomorrow night when we get back from the clinic. Send up good wishes that her blood counts are still good tomorrow and that she is a little calmer about having her port accessed. No procedures scheduled, which is great news.

A new friend I have made on my ALL support group list has the neatest idea on her daughter's website, and I am blatantly stealing it for Kendrie's as well. It's a sort of "through the eyes of Kendrie" feature, which I will try to put at the end of each of my own journal entries. In the meantime, thanks for checking in and have a great night!! ~~~Kristie

THE WORST THING ABOUT HAVING CANCER TODAY: Everything. I haven't quite found my happy mental place yet. :(

THE BEST THING ABOUT HAVING CANCER TODAY: Getting to stay home and do puzzles with Grandma McClung while Mommy ran her boring errands.

No comments: