Weeks Seven

Week Seven.....I remember that period of time a little too well. That was the point that things REALLY started to hit Shaylee. Her hair was falling out, she had NO energy at all, she was pale. It was hard on the other kids too. The boys didn't completely understand what was going on, what Shaylee was going through, what it all meant.

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Tuesday, October 28, 2003 5:34 PM CST

Well, this last week has sucked! Shaylee was totally w/out energy all last week. She didn't even want to play outside at school, which for Shaylee is REALLY tired. We went in today for her "week seven" treatment....it didn't happen. Her blood counts are way down. The WBC and RBC aren't too bad, but one of the subgroups of the white blood count was down too far. Protocol says it can't be below 500, she was at 200. So we got sent home.

This is NOT my idea of fun. I want to go on record as saying such. I really hate seeing her so worn out and totally exhausted. It just isn't "Shaylee" to not run around and play and be happy. Breaking my heart here!!

The one bright spot was she got her video I told you about last week!! Grandma brought it to her today and her face just lit up. I wish I'd had my camera to get a picture. She was THRILLED!! The people who put the video out even signed her color book, how neat is that?!

After the nightmare of 'yes we can get the perscription for your numbing cream filled' - -"Oh wait no we can't" we did manage to get it. After I made TWO trips to the local dr office/pharmacy AND another 45min (one way) trip out to the hospital to pick it up. I was NOT a happy camper. (FYI this is the sanitized version of the story!!! *L*)

Anyway. Thats about it here. No week 7 treatment, basically this will push everything back one week. All we can do is wait and see at this point and hope her poor lil body can regroup!

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We went in, knowing Shaylee wasn't 100%.....but that was the first time we were told "NO, we can't proceed" because her counts were low. I can remember -and the memory is crystal clear- she'd be playing and after just a short time, be exhausted to the point of having to lay down and sleep. I remember just wanting to weep, because she wasn't even strong enough to play.

I also remember the fiasco of getting the EMLA cream (spendy but OH so worth it!). To call that a nightmare was being polite. I specifically called to find out if we could get it filled at our local clinic "oh yes we can do that" FINE, place the order. Get there to pick it up another day to be told "No, we can't get that here". Of course no one would tell me WHY they couldn't, only that they "couldn't". THEN it was the "ok, we can do this as a special order, come back in two days" or whatever it was....NO WE CAN'T CARRY THAT HERE. At that point I was in tears. I really was. I NEEDED that freaking cream for my daughter!!! I finally had to drive out to the hospital, go to THEIR pharmacy where some kind and gentle lady filled the perscription for me IMMEDIATLY, appologized for the problems, asked to be sure I had the tagaderm bandages and sent me on my way. I remember driving home crying. Crying because I HAD to have this silly cream, that it was for my child, and there wasn't a darn thing I could do to make her better. NOTHING. So here I am, driving home, in tears and listening to the radio. And I can remember the song that came on, because it's always been one of my favorite songs, but it hit me as such a deep and different level..... its a song by Rich Mullins called "Hold Me Jesus" and here are the lyrics:

Well, sometimes my life just don't make sense at all
When the mountains look so big
And my faith just seems so small

So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace

And I wake up in the night and feel the dark
It's so hot inside my soul
I swear there must be blisters on my heart

So hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace

Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need

And I've beat my head against so many walls
Now I'm falling down, I'm falling on my knees

And this Salvation Army band is playing this hymn
And Your grace rings out so deep
It makes my resistance seem so small

I'm singing hold me Jesus, 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace
You have been King of my glory
Won't You be my Prince of Peace

I remember sitting at a stop light, and crying. Because that song hit me. It said what I needed to hear, and reminded me that I was NOT alone. That He was my Prince of Peace. It didn't make things 200% better, but it did bring me comfort and yes, so peace!

I'm going to stop there for now. I'll post "Take Two" later, but I have to take baby steps with this because it does bring alot back and sometimes its really hard to step back into that mind set, to remember how very frail Shaylee was. Alot of things happend in the next week or so, and right now, I need to step back from them. I will post soon