Saturday, July 02, 2005

The grumpy pill


The grumpy pill
Originally uploaded by fireater.
There is a point in every bloggers life when they have to figure out how much to share in this open journal of sorts. That is probably one of the main reasons why I haven't posted since DI started, I just don't really know what to share. Do I share that every morning and night now as I grind up this little pill and cover it with chocolate syrup to disguise it's taste that I feel like I'm poisoning my daughter. Do I share the angst and frustration that really just comes from a deep sadness of having to watch my little girl go from her playful little self to a grumpy, tired, whiney little girl who just wants to zone in front of the TV and how it happened virtually overnight? Do I share the resurfacing fears of losing my daughter not to the cancer but to the side-effects of these drugs that are suppose to help her? Aren't meds. suppose to make you feel better?

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. :)

6 comments:

Anonymous said...

Just a word or encoragement...I met an 11 year old little girl yesterday that was celebrating her 1 year cancer free anniversary. She had been mis-diagnosed for the first two years of her disease, then on to almost three years of what you guys are going through...but the amazing thing was, she was one of the most beautiful, loving, genteel young ladies I have ever had the privilege of getting to know. Beautiful, loving, and just a wonderfully open young lady, with a story to tell....that brought me to tears...just keep seeing the light at the end of the tunnel...you'll be there before you know it. May God bless and cover you all.

-chanel- said...

Mark and Tiffany,
please know that my family is praying for you and so are MANY others around the world...I know things are hard and as my family sat and prayed for you guys last night, we were also reminded that this is just one of those things where you HAVE to take it moment by moment, day by day...and not worry about what is to come...we are here for you, my heart goes out to you but my prayers go up to the Almighty, who is CAPABLE OF AND IN CONTROL OF ALL THINGS...dont take this encouragement as something that you read through a computer monitor, but rather as a group of people standing behind you, with their hands on your head and back, praying over you and your family...may you feel peace in your heart today! cant wait to see you at the conference mark!
-chanel-

Mark Schreiber said...

Thanks for the comments. One day at a time is right, moment by moment, and yes I do see the light at the end of the tunnel. Thank you for being a supportive community and thank you for the encouraging words and prayers.

Anonymous said...

Dear Mark & Tiff,
First of all, Mark....thank you for your hearfelt words. I look forward to your blogs even when they are so very hard to read like this one. I feel far from you guys geographically, but so close through your words and through prayer.
I don't have any magic words for you, only my constant love and prayers for your family. May God continue to bless and protect your family and especially His precious Abby.
Love,
Claud

Anonymous said...

Ah, The Grumpy Pill. When my daughter is on dexamethasone, we call it "The Big Eat 'n' Scream" in our house. There should be a purple heart for us parents who can survive an entire dex pulse without losing life or limb!

Keep on keeping on,
Terry, Julianna Banana's dad

Chris Dover said...

Hello,
I am working for the American Cancer Society over the summer doing web strategy. I found AbbyUpdate via your Relay for Life post. Your Blog is touching to say the least. I would like to convey my best wishes, from both me personally, and the ACS as a whole. My heart goes out to Abby and her whole family.
I wanted to let you know that I referenced your blog. (both something out of this post and your Relay for Life description) on my blog at http://relayblogger.typepad.com/
Anyway, I will be following Abby’s progress and will be keeping all of you in my thoughts during this difficult time.
-Chris Dover
christopher.dover@cancer.org