Saturday, March 19, 2005

Saturday morning 6AM

So I wanted to post and let you all know how I am doing, it's been awhile since I've been on here. I am way excited about our house, we were sharing how quickly we found it and did all the paperwork, loan stuff, etc. with everyone at closing yesterday and they were amazed it all went so quickly and so smoothly. Thanks God. I feel a weight has been lifted off of my shoulders in being given this house. I have so loved living at UV, and I was crying as I walked through our apartment last night after the girls were asleep and Mark was at Home Depot with Brian buying 20 something gallons of paint. We brought Anna home here, we moved in when Abby was only 8 months old. It has been a loving and fun community and we will miss it dearly. But, onto new adventures. I try to stay focused not on circumstances but on truth, God's truth. His faithfulness, His goodness, His power, His love... all are over circumstances. Things can be going totally crappy and God is still God and in control. But I gotta tell you, I am SOOOOO excited to have a bigger place, a yard, a garden, a swing set, color on the walls.... so nice.

I would like to give you all some info on how Abby is doing, I know many of you like specifics to pray for. She is doing so well. She is a bit more tired than two weeks ago, now that chemo has resumed. Her legs are weakening but so far she can still walk, climb and run for the most part. She is waking up during her nap and some at night and just crying. She seems uncomfortable but not enough to wake her up, she seems in a dream state so maybe she is having bad dreams. Some older kids that can talk about their side effects have said they have weird dreams on chemo. Her eye is still improving, the doctor will look at it this Tuesday in Denver. The hemorrage has gone down a good deal, making it easier for her eye to see and not have to work so hard and therefore turn inward. We still patch her good eye for 1-2 hours a day and that helps and she actually loves it. She is pirate Abby, thanks to my dad who came to visit with a full eye patch, pirate hat combo and she totally loves the eye-dea -tee hee. She will continue the weekly chemo in Denver which is primarily the vincrystine in her IV and a shot of PEG in her leg once. We give her 6MP in a pill form at night and AraC in her IV 8 days out of the 3 weeks. I have to be honest, the AraC is the hardest. I will share my experience last night in hopes it will help you get a clearer picture of what to pray for.

Mark was at Home Depot and he usually gives it to her (it's the one he accidentally squirted on himself) but tonight it was me. It is DNA altering, and a known cancer-causer. It is responsible for possible cancers she might get later in life amoung other side effects. It makes her sick, although this round we haven't seen any nausea (yeah!) and the anti-nausea med we give her an hour before is great. But pushing it into her IV is an emotionally wrenching experience. I sat there for about 5 minutes praying and talking myself into doing it. I know God is in control, I know he loves her and has a plan for her life that is good and not only that, but the best for Abby- even if it involves dieing or surviving but having side-effect related issues. But for a mom it is still very unsettling. So in a new attempt to not bottle or stuff my feelings I cried out to God and asked for help. Just because I know he loves her and is in control doesn't mean I have to put on a smile and accept it without question or being real with how I feel. I told him I didn't like it, that pushing some toxic chemical into her little body sucked. I want tea parties and trips to the zoo, not this. I learned something in that moment. I was real with God and he responded with so much love and peace, even though I was still upset at the reality of the whole thing. I saw how hard things can heal us-like chemo and my own struggles through this. I saw that I need to let go of her life, to try to control it our do anything to protect her body is impossible. That brought a sense of relief and a weight lifted in my heart along with a great sense of loss and helplessness. I can love and comfort but I can't do anything physical to heal or protect my little girl. That brought tears to my eyes but also a peace that she is in the hands of her creator, her heavenly father. Do I really believe that he is enough for her? That he really does love her more than I do? That his agenda for saving the world isn't at odds with his good plan for her life but that the two are the same? Do I really believe that I can come to him, greiving and in pain and that he will have something to say in this? I was listening to the NPR interview with John Piper after the tsunami hit Sumatra and he kept saying that God works all together for good for those who love him- actually God said it first right? The big question was, did God send the Tsunami or just allow it, knowing he would fix what he could after. God's sovereignty has to be grabbed ahold of on the other end of things like this. We can't remove God's power even though there is mystery in why he causes these things to happen. We can't say he is powerless or that he just half-heartedly allowed this tragedy in our family. He saw that it would be good in the end, and in the middle too, and so whether he caused it or just let sin do it's thing in this broken world, I don't know. But the deal is, He isn't into sparing us from pain but bringing us to him. So my realization in all this is that regardless of how things turn out or how difficult they are in the middle, the goodness of God in tragedy is that he offers us WHO HE IS to fully enjoy NOW in this pain, and that is enough, more than enough. If I can wrap my mind and heart around this I know ther will be profound growth in who I am in God and in my intimacy with him. A ong I heard that stired my heart and maybe will yours as well:

I've heard questions without answers
I've know sorrow
I have known pain
But there's one thing that I cling to
You are faithful
Jesus, you are true

When hope is lost
I'll call you Savior
When pain surrounds
I'll call you Healer
When silence falls
You'll be the song within my heart

I'm alone out of my sorrow
Thru the darkest night of my soul
You surround me and sustain me
My defender forever more

I will praise you
I will praise you
When the tears fall
Still I will sing to You
I will praise you
Jesus praise you
Through the suffering
still I will sing to you
Always sing to you
Jesus sing for you

When the laughter fails to comfort
When my heart aches, Lord are you there?
When confusion is all around me
And the darkness is my closest friend

I will praise you
Jesus praise you

Monday, March 14, 2005

Little bald heads

Here I am again sitting at the CHOA office surrounded by little bald heads. I feel like I've been gone for the last 3 weeks, lost in the numbness of life, trying not to have to feel. But here we sit on the eve of another part of the phase with no guarantees as to how it will pan out; feeling not so ready to plunge head-long into our out-of-our-control life again.

When you walk into the CHOA (Childhood Hematology and Oncology Associates) Clinic you are greeted by the normal doctor waiting room paraphernalia, toy area, Nemo style fish tank, and the like, as well as some very kind office managers. But really, before you can let yourself believe that you are just at your regular doctors for a checkup, the sore-throat or vaccination kind, the reality of where you are hits you. All around the walls are black and white pictures, large portraits actually, of little bald kids, some have wisps of hair or little tuffs; those hairs that just wouldn't let go and are justifiably being left on the heads as a badge of honor. Others are just clean headed, not a hair on the horizon. The other thing that strikes you and brings you back to reality is the cute little hat tree next to the door, filled with hats free for the taking. If you had somehow missed being brought back to reality of visiting a cancer clinic by the end of the appointment the double door closet filled with toys, hand-made quilts and more hats made for cancer kiddos would probably snap you out of it.

Tiffany was reading a little board book last night to Abby called "What is faith" a simplistic book that talks about trust, patience, believing the best about things, all very simple elements of faith. On one page is this picture of a little girl loading up all of her toys in a box to give away to other kids that would need them more, a very kind act indeed. The sentence read, "Sometimes faith is giving all you have to someone else... because you know God will give you everything you need." I've read it many times, as has Tiffany, but this time we also noticed the label on the box... "Toys for Children's Hospital". Tiffany said out loud, "You know, that's us." Just reading our child a book, and bam, oh ya she has cancer.

I've felt pretty good lately, at least I had thought so but the combination of a lot of things in life and especially having to mark down all the medicines on the calendar for the next month has kept me from squelching my feelings any longer. I'm not despairing or anything, I just still catching up with the reality of life and honestly, as crazy as it sounds, the reality of it all still often sneaks up on me.

But all in all, the last 3 weeks have been really, really smooth in comparison to what they could have been like. No rushing down to the hospital, only 1 to 2 trips to Denver for a couple weeks and last week we didn't even have to go to Denver, we only had to make the 5 minute trip to Poudre Valley Hospital here in Fort Collins to get blood drawn. What a great time! I really loved it. No meds, no major concerns, her eye is almost back to normal, everything is going great... And now we start again. Honestly, I just don't really want to start, I want her to be done, I don't want to lose my little girl back to the fantasy feeling world of chemo drug side-effects. The one effect that we are still not looking forward to is the full lose of her hair. She's been pretty unaffected in that realm up until this last round and we think that this one will probably take the rest of it. Tiffany combs out a fair amount each day but Abby has such a thick head of hair that it just isn't that noticeable yet. I guess we'll see. I'll get used to it though, probably like her cute little bald head. Maybe I'll have to get my camera out at the end of this phase and take a nice black and white portrait of my little bald-headed daughter. I'm sure she'll look more beautiful than all the pictures in lobby of CHOA combined!

I'll post a shot of her when it all goes away.

Till later...