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

Week Five & Six

Another week down! Bye bye week five.

This week, Shaylee only had to get the Vincristine. MUCH shorter time at the hospital. We were in and out in under an hour. Wow, that seemed mighty odd. She did pretty good. More tears this week than we've had previously. But she's been rather weepy lately. Poor kid, she's going thru so much, and is being so brave I think she deserves a day of being upset at it all. Also, I think the nurse fumbled with the port more than needed. Grrr. I think I'm going to request the one nurse Shaylee really liked, and see if we can't get her on a more perm basis.
Shaylee's blood counts look pretty good. The white count is same as last week - yeah! So doesn't look like any infections lurking right now. The red count and plateletts were both down, so we'll watch those as well. She's a bit more pale, and more sleepy lately - both to be expected if the red counts are down. So she's taking it pretty easy lately. She just runs out of energy sooner. Her appitite is also somewhat lessened. She was only 28.6lbs this week. Man that seems tiny for 3yrs! Going to ask about using one of those drinks like "boost" or whatever the kids equal is. Just so she gets what she needs on days she doesn't want to eat.

Her hair is much thinner than it was. Notice the new picture? Thats her new hair cut! Soon I'm sure we'll have to shave it simply because its thinning so much. But for now she has a cute short do! I guess this makes it so much more "real". Soon, strangers will be able to tell she's "sick" or has something "wrong". *SIGH*

Oh, Shaylee had her first week of school!! This includes two home visits (one per week) and a friday in class. She had great fun. But she was very tired friday evening. Its a joy to watch her learn and get excited about going "to school, like brothers". She really enjoys it so far!
Well, thats about it. I thank you all for your thoughts and prayers and encouragement. They mean the world to us all!
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Looking back, this is about the time things started getting more "complicated". I'm not sure that makes sense to anyone expect maybe people who've gone down the same, or simular roads. We were at the half way mark for the induction stage. Shaylee's hair was starting to fall out making it all the more real to all of us. I remember getting SO angry at my mom at one point along this time because she was taking such a fatalistic approach. I got SO sick of hearing "if she makes it", "I'm afraid she'll loose the eye", and so many other negative things that I wanted to SCREAM. I finally told her something along the lines of "yes, those are all very real possibilities, but we choose to focus on the POSITIVES; how well she's doing, that she's responding etc." One of the only times I can remember being that angry with my mom.

The weeks with Vincristine only were short appointments. We'd go up, get checked in, vitals done by Nurse Kathy, taken to a room, then accessed for a blood draw. Run the blood draw for counts, then one of the nurses would come back with two things - the vincristine push, and then the saline rinse - - -oh and the heprin. CAN NOT forget that!! TRUST me, we did once and it was HORRID. The heprin is a blood thinner to keep the port from clogging and becoming infected - VERY VERY IMPORTANT. Important enough that it ment having to STICK HER AGAIN to access the port to do it. Poor nurse felt horrible, I felt terrible and Shaylee was in tears. But that only happend ONCE and not on a vincristine only day. Still......once you've had taht, then the port is deaccessed and you're finished. Wham bang bye bye!

By week five we could really see the physical affects. Shaylee would bruise so flipping easily. She was begining to get pale (or more pale since she's naturally fairly fair skinned). Her hair was thining. She would run out of energy so quickly. It was so hard to see Shaylee run out of energy so quickly. Somewhat recently we were watching "Extreme Make-Over: Home Edition" and it was about a little girl going through chemo. I could not bear to watch it. I tried, because its one of those programs we'll watch as a family. But when they had the little girl out playing and she got tired and asked to go to bed, I was ready to crawl out of my skin. I had to leave the room. I sat in my bathroom and cried. It just made me remember all those times Shaylee would want to play, but she just didn't have the energy. I can not find the words, even now, eighteen months later, to tell you the heart ache of watching a little child not be able to play. Please believe me when I say if I could have taken this upon myself I would have in a heart beat.

Around this time she started school with the local HeadStart. Once again God provided for us. For three year olds it was a "home based" program. Where the teacher came to OUR house for the "school" part, and then one day a week she'd go into the school for the socialization part. The gentleman that they'd hired for that year, was in my opinion, placed there by God for Shaylee. Not only was he a kind, gentle person, but he was a Christian and provided a great sense of comfort for Shaylee - and the rest of our family. Mr. B still holds a special place in our hearts. Shaylee talks about him as her "first teacher". I know some people won't understand why we felt he was placed there by God...but I firmly believe that. Through Mr. B, we were provided fire wood so we could heat the house. He knew someone who was moving and wanted to get rid of their wood, so he loaded it, hauled it and helped cut and stack it for us. Just trust me, I know God put him there for that year.

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Tuesday, October 21, 2003 12:58 PM PDT

Another week down!! Bye bye week six. Four more weeks of Shaylee's induction, then we go to maintenance protocol of four weeks on, two weeks off.

Shaylee did really well again today, just the vincristine. She continues to amaze me with her strength and attitude. She really doesn't "enjoy" her treatments, but still she goes with a pretty good disposition and often a smile. I really consider her blessed to be handling things so well, I really do. I didn't allow myself to dream they'd be going so "smoothly" for lack of better words.

Her hair continues to thin out, I'm not sure how much longer it will be before we have to "go bald". We joked that if we have to do it before the 31st, we'll paint her head orange and she can be a pumpkin! ;-D Dr. T gave us a perscription for our own numbing cream today! YIPPY! So we'll head to the pharmacy and get it, then we can put it on when we leave home and be ready to roll by the time we get up there. Plus, that might help eliviate some tears for Miss Shaylee. Now we just pray its not too expensive! Her blood counts were down a smidge again this week, but still w/in acceptable range. Now we just have to keep them there. She tires pretty easily these days and it breaks my heart to see. She's learning that she needs more naps, and if she gets really tired she'll ask to snuggle or lay down. She's such an active little girl, its hard to adjust to seeing her have to sleep so much. But, even so, she's an amazing kiddo!

The boys are doing good, Thane has gone up the last two weeks (for the "short" version) to see Shaylee's treatments, and we'll get Drew up too. Both wanted to go, and see what she has to do, plus I think/hope it would help eliviate some fears and answer some questions for them. Narissa is growing like a weed. I can't belive how fast ALL the kids are growing! Cross your fingers, say some prayers if you would. James found a temp job that MIGHT go perm in 90days if everything works out and they "like" him. Doesn't pay much, but at least its a job! Means he can't go with me on Tuesdays for Shaylee's treatments, but mom is willing to come watch the other kids and Shay and I can learn to manage on our own up there. I'm very greatful that James was able to go with us those first few weeks till Shaylee was more comfortable with the routine. God has been good to us that way!

I don't know much else at this point. Shaylee was very tired this morning, and really wanted to go for a sleepover at grandma and papa's house, so things are quiet here. Narissa is playing with some paper and the boys are at school. Hopefully Shaylee will get some rest at grandma's.

Hey - do me a favor? If your looking for a good kids video to buy your little ones, go to Best Buy (only place I know off top of my head) and buy one calle "Farkelberry Farms - Wet and Wooly". Shaylee had rented this with Grandma last time she had a sleepover and fell in LOVE with it! Mom said they were really really good and asked me to do some searching online to see if they had more. I did, and found its the first one for a new company. So I sent my mom the link for their page so she could look (www.farkleberryfarm.com), and she saw they were looking for reviews from people, so she sent one in telling them how much Shaylee enjoyed it, and how they wanted to get her a copy to take for her chemo treatments. Well, these WONDERFUL people are sending her a complimentary copy of the movie and a color book! I am so touched. Here they are a new, and struggling company trying to start out and they are willing to send a free copy to us! SO, I am happily telling EVERYONE I know to go buy one of their movies and help them out as a way of saying thanks! Farkelberry Farm, Wet and Wooly. Thanks!

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Shaylee was -and is- an amazing girl about all the appointments and chemo. Proof, in my eyes at least, that God blessed her with the personality He did, so that she could get through all this?? The fact that she would ask, and get MAD at me when I told her that no, today wasnt' a chemo day! She loved the nurses and staff at the clinic. Honestly, I can't fathom that too many kids ASK to go up for chemo. I mean she wasn't too fond of the cream - "its cold" and I don't think many people actually LIKE being stuck w/ a needle in their chest, but as long as we were reading a book she was good and golden! But as it says in the update - we got a prescription for the cream to take home, and it REALLY did make things easier!

Shaylee continued to amaze us with her ability to KNOW when to stop, when to rest. It was sad to see her be running around, but suddenly start lagging....and then just stop. Sometimes she's lay down and just CRASH and as I've said, it just broke my heart to see her have to stop. To not have that energy. At this point, like the doctors had warned her blood counts had started dropping. The word "scared" doesn't really cover how that maked me feel....knowing that by trying to "fix" the tumors, we were placing her at risk for so many other things. Thing like a simple cold could end her up in the hospital. We all got very good at handwashing!

Thane was in kindie at this point, so he came up with us for the Vincristine treatments - we could still get him to school on those short ones! We wanted the kids to know what was going on, we didn't want to have them think it was something "fun", but we also didnt' want them being scared of the unknown. It was hard on them, not really understanding what thing were, and what was being done. I remember sitting in their room and trying to explain to them when we first found out.......trying to make it simple enough for them to understand, trying not to scare them, trying to comfort them when inside I was screaming and crying. Drew, being who he is, was worried that Shaylee would die, that she would be super sick, that he'd caused it somehow. He tends to worry about things ALOT. So we wanted them to be able to go up with us and see an acutal treatment so they KNEW what it involved.

About this time, James finally found a job. He'd been out of work for almost 10months at this point. But it had enabled him to come with us for the first few weeks, and I'll be forever greatful for that. It allowed both Shaylee and I to become comfortable with the "routine" of things with his support. When he got the job my mom and dad helped with watching Thane and Narissa. They were so good to help get Thane off to school, keep Narissa entertained and everything. Many times they would take Shaylee home with them, so that she could rest, and so we could focus more on the other kids. I can remember being so afraid they'd feel lost in all the doctors appointments and what not. We tried very hard to NOT allow that to happen. We tried to be sure that they got mail too -Shaylee got exta mail from chemo support things- , that they got to do special things, taht we spent time with them....... It wasn't an easy feat juggling everything.

Shaylee was still going to school, we used face masks for her on days when her counts were down, and she had her little bottle of purel for using after playing with toys, she knew to wash her hands etc. Mr. B was very good at keeping an eye on her and somedays she didnt' want to play much, but she REALLY wanted to be at school. Somedays we'd have to keep her home, because well.....parent's aren't always good about adhering to the "well child policy". She was loosing more and more hair and it was getting to the point that we tried not to wash or brush it too much because we didn't want to rush the falling out process. We knew it was a matter of time and started talking to Shaylee and the other kids about it more and more. The boys offered to cut their hair too, so she wouldnt' be bald alone. I was so proud of them. They really were SO very good about everything.

Its an incredibly hard journey to watch your child go through. I can't even tell you how many times I wanted to just make it all go away. What parent wouldn't?! But thats not how life works. I KNEW God had a purpose with this, and I can remember thinking one night when Shaylee was snuggling with me in bed, thinking that I may never get to see what the purpose of this was, it might not be in my lifetime, but I KNOW there is one. . . That SOMETHING is going to happen because of Shaylee's going through this journey. I don't know if it will be in the medical scene (although we were NOT part of the clincial trial), or someone being touched because of Shaylee's story or what....but I KNOW THERE IS A PURPOSE!!

until next time.