Saturday, July 02, 2005
So I do know what to share really, it's just I don't know how to share it. I think what's up above is a pretty good start. I know that I need to share these thoughts and these feelings with you all because you all are part of this journey too. God created us for community, to share in the tough times and the fun times. I hope you feel closer to my family and Abby by now and that you really will know what is truly going on when you read a post here. I know that we are not alone in this and I thank you for all of your prayer, support, encouragement, and comments. Keep the comments coming please, it's nice to hear from you all.
So as you can see Abby is doing ok. She went from her smiley chipper self to a grumpy, crying shell of herself over night. When we awoke on Wednesday morning we had a different little girl living with us. I don't know if you can really relate but Tiffany says that it seems like Abby's having a 10-fold killer PMS type week. Just out of control and inconsolable one hour and then seemingly happy and ready to go swing in the back yard the next minute. Couple that with the fact that she had a spinal tap on Tuesday and another chemo drug that makes people very nauseous for days, and one more that makes Abby very constipated, oh ya, and the Decadron that makes them hungry with mood swings and yes... what we have here is a very tired, grumpy, crying one minute/smiling the next, hungry, nauseous, sore, dizzy little girl who doesn't understand why she feels like this and the only comfort that she seems to be able to find is by smelling her blanket and sucking on her fingers.... constantly. On that note, pray that she doesn't get raw sores on her fingers, her middle 2, because she has them in her mouth when ever she is awake lately.
She also saying that she thinks that she needs to go to the Hospital a lot lately since she doesn't feel good. Breaks my heart really. We actually did go down to the hospital yesterday, she was excited for a minute until I put the Emla cream on her things. This is a numbing cream, topical, that they have you put on before they do spinal taps or shots, yesterday was the 2 shot day (see the roadmap for PEG, day 4). I put it on right as we where about to pull out of the driveway and she did NOT want that on... She is pretty smart now and can see the signs of what is going to come when we put Emla on. She cried for about a half an hour... all I could do is tell her that it would help and keep driving. She did ok with the shots but must have been pretty sore on the way home because she just sat there and looked out the window, didn't want to play or talk, she didn't even want to get a new toy from CHOA (they give the kids a toy especially when they get a painful procedure).
Well, the girls are up now so off I go... I've got to go crush up that nasty little pill, drowned it in syrup and give it to my little girl for another day of fun. :)
Tuesday, June 28, 2005
That's kind of how I feel to day. I'd rather take a country drive, a country drive on Sunday even to really slow things down .in a tractor. But nay, on to Denver we go, roadmap in hand, off to start DI.
So, yes the roadmap that you see in the image above is not your typical roadmap, but for us it is becoming more typical. Every phase of this treatment has its own "roadmap" to help us know what's coming up. This roadmap is a complete protocol of what Abby will be getting, and when, for all of the Delayed Intensification time frame, 59 days in all. As you can see from the top all patients must qualify for this phase with a certain ANC (immunity) count of 750 and a certain level of platelets. Yesterday Abby finally qualified since her ANC was 1600 but last week she was only at 200, that's why she couldn't start.
Well we've got to get going. down to Denver to get all of day 1's Meds. I can feel the car accelerating already:-).