Saturday, February 05, 2005

Christmas in Feburary?

Sitting here in our perpetually Christmas time living room not really feeling the Christmas cheer. Maybe it's the fact that I was woken up a few times last night by coughing, crying to go "potty" or just our alarm notifying us that it is time to give our leukemia daughter with the staph infection the IV antibiotics. Maybe it's the fact that it is almost Valentines Day and the only red things that we have in our house are the red mittens woven into the garland that drapes off the banister. Maybe it's the fact that Abby's legs being the size of small ladies wrists don't function the way they were meant to right now. Maybe it's that helpless pit in my stomach that seems to continually surface and sap away my strength as I watch my family walk this new life out in the same weak and stiff legged way as my daughter... every 10 joyful and perseverant steps followed by a head long face plant in the sand. Just not feeling the cheer you know?

I was watching "We Were Soldiers" the other night with a few other guys and the question came up as to who you related the most with in the movie. It being a movie about an out numbered army unit in Vietnam, I wished to related with one of the brave soldiers holding off the enemy. Or actually just any soldier, the ones that were cornered, or who went back to carry out a wounded friend. Some one in the battle, who has the option of fighting a noble but possibly deadly fight. But I didn't, I resonated with the wives, yup the wives. It may seem weird but let me tell you why. You see, these wives all had their husbands sent off to war. They had to stay at home with the kids, the bills, and the semi-constant knowledge that their husband may not come back. So they would clean, some would hang with friends, would just stare out the window, maybe longing for the days when their husband was outside playing with the kids. But I bet all of them, when they went to bed at night in an empty bed, engulfed by the silence and alone in the dark thought the same thing... What fight is he in right now? Is he going to be severely hurt? Will I lose my husband to this battle? For me though, it's not my husband, obviously... For me, it's my little girl that is fighting this fight.

Oh how I wish I could be in her place and fight this fight for her. I doubt I would do as good of a job though. After the month of treatment I would just want to be left alone and sleep, hiding from the world in bed in hopes that when I woke up it would all be gone. I would just be pissed, quite frankly, of my situation... but not her.

After a month of treatment she is as joy-filled as ever. Her smile quite often lights up the dark solemn spots in my own life. What faith of a child really. I keep thinking about what she is going to learn in this, but maybe it is what I am going to learn in this. I keep getting sad at her predicament when she isn't sad about it. I keep getting mad in ways and wondering why God allows this to happen to little 3 year old girls with so much life ahead of them... But she doesn't, she is as giggly as ever! I feeling like I should tell her that she should be a bit more depressed. Say something like, "For heavens sake Abby, you have a staph infection, you have a tube implanted in your chest so that you can get medicine (oh, that by the way is going to kill off all the good stuff in your body too), you can't walk very well any more and it may get worse before it gets better. You know you really should be mad about this! You have every right to." But does she? Do I? Do I have the right to put my warped view on this child’s life?

You know, the thing is, she doesn't know what is "suppose" to be. She probably just thinks that when you turn 3 years old, along with birthday presents comes an implant, weekly trips to the doctor, and leg weakness. For her that is all she knows. That is the faith that I want. I don't want the loss of my "how it is suppose to be" to control my life. I don't want to be like the ladies in the movie who try to busy themselves so that they can pretend that life is different than it is. I also don't want to live life starring out the window, wishing for a different day to come, for my "suppose to" to be reinstated. The reality is that Abby isn't off in a war by herself, she probably doesn't even feel like she is "fighting" anything. She's right here for us to enjoy weak-legged and all. Once again I am going to take a page from her book, actually a bunch of blank pages, pages of "I don't know what will happen and I'm fine with it being out of my control", those pages will have to replace my "suppose to be this way" pages and I pray that they will.

On that note, I think the Christmas decorations may have to come down today. We can't be stuck in the "December of Diagnosis" forever. As much as I like the lights, we're going to have to move on. I think I'll have my little girl cut out some valentines today, I think I need to learn how to redecorate from a child’s' perspective. Maybe, she can cut out a purple heart, one for her, she deserves it!

Thanks for coming along with us in our journey in this too, in the ups and downs, highs and lows, all of your comments and prayers are very special to us. Thank you.

Thursday, February 03, 2005

Laughing, Playing and a Staph Infection

Well the title says it all. Tiffany just got down to Denver since the results of the blood culture showed a staph infection for Abby. 3rd time down there in 3 days, a bit tiring but we are doing good. Probably because in the last 2 days we have started to get back our little girl from the grips of Prednisone!
Last night she was just giggling, laughing at Anna and even tickeling me with her blanket. At one point Anna dumped all the toys out of a Play-Doh bucket and put it on her head. Abby just busted up laughing and so did Anna, as she played peek-a-boo with Abby. By the time that they were both laughing I was laughing too and Tiffany was starting to cry as well as I. So good to see her laugh and having fun.
Today, Tiffany went to the park with a freind and Abby played on a swing, walked a little bit, face planted in the sand a couple times too, but Tiffany helped her understand why it is hard for her to walk and the it will get better the more that she walks.

As for the infection, she will start yet another course of antibiotics, every 8 hours and we can probably do this at home through her Broviac. This infection, even though it is a staph infection is one of the easier ones to take care of. They'll put her on the big guns for now, and once the see how this type of staph response to other types of antibiotics, they may be able to put her on one that is a bit milder and only has to be administerd once a day. I hope that one works out for her sake and ours, every 8 hours is a bit hard to keep up with.

We are sooooooo glad to have our smilely child back that a life-threatening staph infection really doesn't bother us too much... I mean what part of this treatment isn't life threatening anyway really?

I'll try to post some more smiley photos here soon!

Tuesday, February 01, 2005

Tuesday Bone Marrow Results

Well, Tiffany is back down in Denver with Abby... she had a fever of 101 so down they went. Anna and I went to New Belguim... just to look at the building of course... I think I got the better end of the deal.

Anyway, from my breif talk with Tiffany on the phone, It looks as if Abby is in remission! That is at least on the preliminary test anyway, the better test that tells how many cancer cells there are per 1,000 or per 10,000 won't be back for a while. That test will tell us how rapid of a responder she really is, or isn't.

As for Abby's current condition, she is on the line between being admitted to the hospital and going home. Right now Dr. Smith thinks it will be ok to give her antibiotics and send her home. Her ANC counts are actually lower than they were yesterday, down to 200 or so, but they should be comming back soon based on how her bone marrow looks. So, they probably are finishing up the IV antibiotic right now, then they'll be home.

Just a quick update, but overall things are looking really good!

Sunday, January 30, 2005

Day 28 and Tomorrow's Test

I took Abby to church today, she made it through the first 30 minute but then was getting a bit tired. She had to wear a mask while we were around people, since her counts are still low, and she wasn’t real excited about how it blocked her from smelling her “dee dee” (blanket) and kept her from sucking on her fingers, but it worked and it was nice to get out. One of the reasons that we braved the germ infested world of church was that Anna has a nasty cough and fever anyway, so I figured she’d probably be better off getting out of the house. Anyway, we had fun and it was good to see everyone.

Speaking of tired, I’m tired. This gig is kind of hard, good and worth it but hard. I’m both excited and anxious for tomorrow’s appointment. Excited that she doesn’t have to get chemo again till next week, excited that she will be off the moody prednisone pill for a while and excited that we may get to see more of the little girl that we remember. Doctor Smith, thinks that the leg weakness, excessive hunger, and moodiness will go away once she is off this, and with out chemo either, we may just get out daughter back… But that is also where I get anxious. Anxious about another early morning at the hospital with a hungry girl that hasn’t eaten for 16 hours, anxious about whether or not she really will get less moody when off the meds and a couple other worries. I think that I will stop worrying though, and just hope for the best.

We have really seen some improvements in the last week and on some days, other than walking, she seems pretty normal. I just have a real desire to go out and play with her again, go to the park, have her walk next to me with her whole hand wrapped around my index finger. I’d love to have her want to “hop on Pop” as she says, again when I get home from work. Those times will come, I know they will, I just miss them I guess.

Right now she is sitting next to me eating string cheese, crackers and noodles, her new favorite combo. She’s also been saying that she wants steak, something about New York, I don’t know what she means... Also, she keeps saying Cabernet… and words like ‘private reserve’… J Oh wait… maybe that’s my craving kicking in. Actually I’m glad she doesn’t want pizza all the time or something, I can get club crackers and string cheese pretty easily and it is MUCH better than trying to make bunny mac N cheese!

On another note, Abby is now signed up as an official honoree of the Leukemia and Lymphoma Society for the Team in Training race that I talked about in a previous post. I’ll try to post a link on Tuesday to a website with some photos that participants can use if they want for their support letters. And for everyone else out their that would like a photo of her smile that can light up a room for your desktop, fridge, or encase of a power outage.

We’ll probably know if she is in remission from the tests tomorrow by late Tuesday or early Wednesday. We’ll post them as soon as we know. 95% of kids are in remission by then and Dr. Smith thinks that she will be one of them base on earlier test.

Thanks again!