Friday, January 21, 2005

Abby & the TV

Haven't posted many updates lately. Frankly it's because it's a bit depressing really, not really much to update on. Abby, after each treatment is kind of a wreck for a few days, doesn't want to do much and just sits on the couch and watches T.V. All day she watches that thing, eats bunny mac and cheese, popcorn, and sips out of her pink water bottle... she's just not herself. I think this is the hardest part for us right now, now that the shock of the diagnosis is gone, just seeing her sit on the couch staring at the TV. I'd take some pictures and post them, but they would mostly be the same, Abby on the couch. I know it's not a real uppity post but that's just how she's been, for the most part during this induction phase of the treatment. It honestly breaks my heart to see my little girl like this. I know this treatment is the best for her, but what kind of life is that, sitting in from of the TV.? Just making it really, trudging through these days, hour by hour and minute by minute.

Now don't get me wrong, she does smile sometimes, that beautiful Abby smile that lights up the room. And she has been playing with stickers a bit more now... So, I'm hopeful and very glad that this phase only has to last another couple weeks, the thought of another potential full month of induction treatment was making me crazy.

The other day, actually yesterday, Tiffany and her mom did take the girls down to the Bellevue/Watson Fish Hatchery and the Poudre River. I'm sure it was nice for them to get out and Tiffany said that Abby had fun feeding the fish. At one point though, Abby was walking, a novel experience for her lately, and she tripped and then couldn't get up. She just sat there and started to cry... Tiffany picked her up, gave a big hug and cried too. I think it was a "I just want my normal smiley little Abby back" kind of cry. Abby's cry too, was probably of a similar thread, just in a child's understanding, knowing that something is drastically different right now.

Maybe all of this is finally hitting because the whole leukemia thing has finally sunk in. "Hi, my names Mark and I'm a parent of a leukemia kid", (you say, "Hiiii Mark!"). No, but really, it has definitely sunk in, we still feel loved, still encouraged, still hopeful most of the time, and now it's time to keep on keeping on. We don't want to just "make it through" this phase either, we want to be alive in it, we want Abby to be alive in it, we want to live it as a family, no trudging through here! Pray that we do.

Well, Abby will be home soon from her check up in Denver, sounds like she is doing great. Dr. Smith, or Dr. Sniff as Abby pronounces it, said that she will just be a bit weak while her counts are so low, a bit nauseous & tired from the chemo, and moody from the Prednisone... Well that explains it! :) I'm just glad it's 70 out and I can sit on the porch and enjoy the sun, feel it's warmth, the breeze and in it all remember how small I really am.

Wednesday, January 19, 2005

Rapid responder!

Dr. Smith called today and told Tiffany that Abby's bone marrow tests were very good, under 5% cancer so she is classified as a rapid responder! I'm glad for her that she doesn't have to keep this agressive chemo up too much longer, it's got to be hard on her, she just hasn't been herself.

But, in 2 weeks, on her birthday, she will have her final treatment of this induction phase. At that time she will have anther lumbar puncture (spinal tap and chemo), a bone marrow test again, and another round of chemo. What we want to see from that test is no signs of leukemic cells, that would mean she is in remission and that would be a great 3rd birthday present indeed!

Until then, keep her in your prayers, especially while she is so nutropenic, under 500 ANC, and at such high risk of infection.

Thanks you to everyone that is reading this, thanks for being part of this wild, often stressful but always rewarding journey!

Couple quick updates

No word on the results of yesterdays bone marrow test, should know soon though.

Her blood counts are very low. Total White count = 2300 and her ANC (immune fighting part of the white count) is 100, very low. Normal is around 1500 in healthy kids, under 500 is dangerous because of the possibilities of infections. Since a lot of the drugs that she is taking, and the absence of white blood cells, a lot of the since of infection can be masked. So if she gets a fever of 101 right now we have to go back down to the hospital like we did the other night.

As you can see, things are a bit up in the air and tense right now. Please be praying. We are hoping that her bone marrow shows less than 5% cancer cells so that she will be classified as a "rapid responder". If they don't then the treatment will have to be a bit more aggressive.

Abby is not herself today at all, probably from a lot of factors, one being the bruise left on her back from the procedure yesterday, and probably the fever. Also the first couple days after the chemotherapy can be worse in terms of side effects so that may be it too.

We'll let you know as we things progress, if her fever is still at 99.5 or higher at 1pm we will probably go back down to Denver.

Man, what a wild, uncontrollable ride huh! Like a big crazy roller coaster. I often wish it were different at moments like these, but what do I know really? I don't control the world, or even my little part of it, that's a good thing. So, off to hang on and enjoy the crazy ride, I just hope their isn't a double loop up ahead.

Monday, January 17, 2005

Valley song reflections

Jars of Clay “Valley Song” just started playing on my computer as I was surfing the Net, trying to get some work done for my new Engineering class that I’m teaching this semester. Powerful song, makes me cry each time that I hear it; even more now, I’ve always loved it. Just the other day, on the snowing drive to work, I was thinking I should download it from I-Tunes so that I could listen to it more. Then, in the mail that night, a package from Chaya and Brian came. I hit the button to play it, bumped the skip buttons some how and guess what the first song to play was? Yup, the Valley song. I just started to cry there in the living room, in front of the stereo. The only one around at the time was Anna, Abby was sleeping. Anna just looked at me with a sort of look of confusion or something, her lip starting to quiver in empathy or fear. She is a very sensitive child. I told her that it was ok, and that Daddy was just sad. Then she did the unexpected… She fell onto my shoulder wrapping her little arms around my back and gave me a hug. She hugged me longer than I can ever remember her embracing me before, and right there, in the middle of the living room, with my 18 month old girl hugging me, I cried a bit more. It was a cry of confusion, a cry of hardship in this journey, a “I wish I could take it all away” cry. It was a cry of me wanting her so much to just be ok in the midst of thinking about possibilities that I just can’t think about right now. Most of all though, it was a cry of hope, of me letting everything that was burdening me go and letting God take the load.

That’s a spiritual moment right there, I time that I won’t soon forget; being comforted by your little girl, by God, by song, and at the same time knowing that it’s going to be ok and passing the knowledge on to Anna with a hug.

One of the lyrics of the Valley Song that give me great hope and comfort, and hopefully will you too, is the following:

You have led me to the sadness
I have carried this pain
On a back bruised, nearly broken
I'm crying out to you

I will sing of Your mercy
That leads me through valleys of sorrow
To rivers of joy

While we wait for rescue
With our eyes tightly shut
Face to the ground using our hands
To cover the fatal cut

And though the pain is an ocean
Tossing us around, around, around
You have calmed greater waters
Higher mountains have come down

Thanks again to everyone for all of your reflections, comments, support and prayers!

Sunday, January 16, 2005

A Personal Encounter

As I read the comments to Abby's blog, to Mark's and my and my dad's posts, and as I see people or talk to them on the phone, I keep hearing "you are doing so great with all of this", "you have such faith", "you have such courage". Don't get me wrong, I appreciate and am truly encouraged by these words. But this morning as I sit and read the Psalms I am struck by my own humanity, my own flaws and my own inability to handle any of this. It is so big. How do you deal with the truth that an all powerful God would allow a child to suffer? And possibly to die? How do you put to rest in your heart the thought that if God is so loving, why would he take a child from her parents? Or at least allow her to suffer? These are are the things that my heart wrestles with. And I know that I can take these hard questions to my Savior, to the One who may not be able to give me answers I want because I can't understand the workings of the universe and why things are the way they are, but I will take them to Him and He will help me get through them and find peace. And He has. I have heard Him telling my heart that this is not what He would have for Abby, or for all of us who grieve. In the beginning there was a plan for glory and for paradise and we chose to doubt God's goodness and because God didn't want to force us to chose Him, He allowed sin to rock our world. It is because of sin that Abby's body is wracked with cancer cells. It is not because God can't or won't fix it. Now He does have the power to heal her right now, I do believe that. That is the hard thing. Why won't He? Well, He has whispered to my heart through this all the reasons He has allowed this. There is a bigger story than Abby's health and our love for her. It is so key for me to lock into this or I will get bitter and angry at God. And I'm not just spitting out sunday school answers here. God has told me that He will use this whole process of Abby's cancer to bring so many people closer to Him. The desire of His heart is that everyone will know Him and chose Him and therefore be able to be with Him forever. Abby's cancer will shine a light into a dark world in a way that her not having cancer wouldn't. I believe that to the depths of my soul. I have seen it already in more ways that I can even list here. It is amazing how the lover of our souls really does turn all things to good. And as for my "courage" in all this, the only reason I am standing and moving through each day with peace in my heart is because I have had the honor of a personal encounter with my Savior. He has rushed in and comforted when I didn't even have words to say to Him. He is amazing. He is so faithful. He loves Abby more than I do. She is His daughter first. He will take care of her. I pray constantly that He will heal her so she can be with us for many years. But I also know that, like Abraham when he walked to that altar with his precious, only son, that You can be trusted. In my heart I know that I will be okay because You are with me. The verse I am hanging onto in this is Psalm 28:6- "The Lord is my strength and my shield. My heart trusts in Him and I am helped." Thank you all for reading this. It is good to share my heart with you all. It is therapy. I know you are all praying for Abby and that is so comforting. You all give me strength to run into God's arms.