Slight change

just for right now. I was reading a friends blog and as usual, Tammy has many good things to say. She and Kirsten had been talking about prayers and how sometimes God does not answer them the way we want or in ways even, that we understand. Rereading Tammy's post today got me thinking about when we were going through our "journey" and especially at the start.

Did we pray that we wouldn't have to go through it? Sure. I think its safe to say NO PARENT WANTS to submit their child to chemotherapy, to being sick, to having no energy.

Did we pray that she'd be healed, that the tumors would go away? Yes. And no. You might be wondering how we can say both yes, and no. Because when we prayed for it, we specified "if it is YOUR will". Of course, our will would have it never have happend in the first place or for an amazing healing of course. But it comes down to my/our core faith - it is NOT MY WILL that matters, but GODS. So yes, we asked for healing, that the tumors would be gone without Shaylee having to go through even one day of chemo if it was GODS will.

Which then leads people to have asked us if we were angry when God did NOT answer our prayers and heal her. Ask me something simple, like was I sad? Was I disapointed?? YES we were sad, we were crushed that we had to submit her to the rigors of chemo. But were we angry at God?? Ok, briefly..I admit to wondering and asking WHY SHAYLEE?? But angry? No....I honestly don't think I ever was. Like I said, yes, I did ask "why Shaylee" but almost immediately that verse came back, the one I've already mentioned. Jeremiah 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." How could I be angry when deep down, I KNEW this was part of Gods plan?

Yes, it was that simple for me. There has NEVER EVER been a day when I didn't believe that. Not one. I know, deep down in my heart of hearts, that God DOES have a reason for this. That somehow, in some way, HE IS GOING TO USE THIS!! He's going to use our experiance. He's going to use Shaylee. He's going to use her story......SOMETHING is going to come from this. I can honestly say that. I can tell you that has been my firm strong hold through the whole thing. I had to hold on to my faith in that, to my belief in the "plans not to harm you, to give you hope and a future" that Jeremiah talks about. That and the verse from Romans I've mentioned before as well (8:28) "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" I just KNOW that God will cause this to work for good. He's already used Shaylee's story to reach out to people in small ways.

My parents live fairly close and we were blessed to have their strong support throughout the journey. Many times they'd take the kids, or take Shaylee so we could focus on Shaylee or the other kids depending. They constantly were available to help and continually prayed. The church I grew up in, was ALWAYS praying and to this day people are asking how Shaylee is doing. My folks owned their own business and had wonderful employee who was VERY kind and sweet to my kids. Gerd would always ask how Shaylee was, and tell us he was praying. He was not from the US, and English was not his first language, but he played piano BEAUTIFULLY, and his wife sang. Many times he'd come to my parents house/home office to get papers when were were there and would laugh to see Shaylee singing "Open the Eyes Of My Heart" which was, and is, one of her favorite songs of all times. He shared with my parents some months into Shaylee's treatments, long after he'd stopped working for my folks, that one Sunday at church when he and his wife were leading the singing, they'd stopped and shared Shaylee's story. He told about how she was going through chemo, but said that depsite all that, she still had the JOY that God gave her, and a faith in God, that was so simple. They sang "Open the Eyes Of My Heart" for her, for HIM............and it had an incredible impact on their church.

Another friend asked us to use Shaylee's story as the main forcus of his sermon one Sunday. So we drove the 40 min so we could be there to support him. Jerry is an amazing man, and if you are a Michael W Smith fan, and have heard his song "Kentucky Rose" , you've heard Jerry's personality clear as day. We love this man. He did such an awsome job conveying what Shaylee was going through, how SHE never lost her faith in God, taht God loves her. That He provided her with kind doctors and nurses. SHE UNDERSTOOD that even as young as she was. Once again, God used that to reach people.

So yes, I have NO DOUBT that this is for a reason. Did God answer our prayers of healing?? Yes. He simply said "no, not right now. not that way, I have other plans for her"

Weeks 3 and 4 of induction

Wednesday, October 1, 2003 6:54 PM CDT
Well, round three is done. We have made it yet another week into this 'journey'. Shaylee continues to amaze me with her cheer and her indurance and her upbeat attitude. All last week, she kept asking if it was time to go back to her doctors....and she'd actually get MAD when I said no! She is an amazing child. Things went well yesterday. Mom was on her way to watch Narissa and Thane when she ran into a wonderful traffic pile up -figuratively speaking- and couldn't get to the house in time. So James stayed home with them, and I took Shaylee in, mom met us at the hospital and got to see what Shaylee's treatments were like. Shay did really well yet again. Only a few little tears. Her blood counts are good, the doctor was pleased and said that she must have 'really strong bone morrow'. When I emailed my cousin - who was an oncology nurse for 8yrs- to have her help me understand all the blood work, she also said that the counts looked really good. YEAH! We did get a perscription for Septra to give her as maintanance in hopes of keeping her from getting pnemonia. *SHUDDER* So we'll be going to get that soon, no clue where the money is going to come from, but God has taken care of us this far, I'm sure something will work out. In all the 'confusion' of getting into the routine w/ this chemo, doctors appointments etc, we didn't get my credit card payment mailed in so now I'm behind on tbat. UGH, calgon take me away! Again, somewhere the money will show up right???? Anyway, thats where we are now. She's taken her anti-nausea medicin (infact, I need to go give it to her!) like a champ today. She's felt good enough we went to the library and she's hounding me to watch her movie, so I'd best go get the 'no sick' medicin to her and see about putting th movie in...plus have to check on my cin. rolls! MMMM!! And we're having homemade wiener wraps for dinner. Anyone wanna come over?!?

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Tuesday, October 7, 2003 4:58 PM CDT
Well, lookie here! Its the same day as Shaylee's treatment and I actually have a moment to udate!! Guess thats what happens when you have a 9:00am appointment!Things went pretty well today. There was a "neat" red wagon inside the doors today, so we got to ride that upstairs. Ok, so "WE" didn't get to ride up, but Shaylee and her bear did! She knew EXACTLY what to do when the nurse called her to weigh and measure. She went back, hopped up on the scale, jumped down, backed in to see how tall she was, then bounced onto the chair to do her blood pressure, asked to push the button, put her arm in the air to do her temp and chattered the whole time. She is such a joy!She did really well again, when they accessed her port. Only a tiny bit of fussing, then right back to reading the "Tigger" book we'd brought. We had to wait just a bit for the blood tests, so they know what strength to order the chemo. Some of Shaylee's counts are dropping but the doctors seems pretty pleased with how well they are 'maintaining' at this point. Right after they got her IV in, they had a bed in the infusion room, so we moved in there. Shaylee really likes getting to go in there - they have TV's and even better - - they have CABLE! So she gets to watch Stanley, PB&J and those things we don't get at home.They were much slower at the hospital today, people wise, so things went quicker. We didn't have to wait as long to get started or inbetween things. Shaylee amazes me with her ability to wait her turn. She is an amazingly strong child. She is still cheerful about going in, says hello to the nurses and has a smile for everyone. Daddy helped her order her lunch. Yes she got Mac-n-cheese AGAIN!! What can I say, she likes it! One thing they told us, especially as we get further into this, LET HER EAT WHAT SHE LIKES. Her appitite will most likely change, so it gets to the point where what ever we can get her to eat goes! Her hair is falling out more and more. *SIGH* Breaks my heart, even though I know its only temporary, its still so sad to brush it and see a bunch of shiny strawberry blonde strands on the brush, or in your hand. We're making a point to talk about it more, that her hair is going to fall out, that she can wear pretty hats and scarfs etc. We'd gone to Fred Meyers the other day and she found a pretty scarf type things she like (ok so its just a pretty pink and purple bandana!) so we bought it for when her hair comes out. She promptly told Grandma "its ok my hair can fall out now, I have a scarf!" Well, I can't think of anything big to post right now. Thank you all for reading and praying!

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As I've said I'm using the history from our Caringbridge site to capture the "feelings" of that time. I've said before (and you'll see me say it alot in the history) that Shaylee LOVED going to all her appoinments. I know that has to be a God given thing, most kids DON'T like going to doctors appointments, and most kid wouldn't CRY when you told them it wasn't the day they had to have chemo, that it wouldn't be "chemo day" for five more days. I continue to be amazed at Shaylee's comfort and ease at her appointments. She's ALWAYS been that way. "Doctors appointment? COOL, who do I get to see" is an honest mirror of her attitude towards things. Wow....

I rememeber having a lot of fear at this point of the journey. James wasn't working, money was almost non-existant. I lived in constant fear of someone getting sick. Not only because of the risk to Shaylee with her lowered immune system, but because if we ahd to go to the doctor it would cost money...money we didn't have. Its amazing how quickly you learn what you COULD go with out. Cable TV - much TV at all when you can't hardly get a signal. We did refuse to get rid of the cell phones, we were living in a VERY rural area, and I was running 45+min away for doctors appointment, and I had to have a way the school could reach me, or I could reach them etc. But still it was a very scary time. Alot of the time it came down to do we pay rent, or buy food?

I think it was between the second and third week we noticed Shaylee's hair thining. By week four it was noticable to us. It broke my heart. She had such lovely beautiful hair! This is one of my favorite pictures of her before the chemo. You can see what color her hair was.
It had reached the point we could "do things with it" like put it up in hair pretties -bows and clips. Not alot but at least we COULD! When it started to thin out we trimmed it and gave it a little shape so that it wouldn't be so starteling when it fell out or was cut off completely. We made sure to talk about that with her from the start so she would be prepared. We talked to the boys about it as well, how the chemo meds sometimes killed of "good" things like hair folicules while it killed off the "bad" things like the tumor. We tried to be very honest with the boys, in telling them what was happening, what might happen, what could happen, and what it all would mean. We wanted them to be armed with information but not too much or too in depth. They are still kids, we didn't see need to SCARE them!


As I said we trimmed and shaped Shaylee's hair as it thinned out. She was very proud of her "cute little cut" and loved to tell the nurses she'd gotten it cut. Yet another thing she delt with beautifully, that I struggled with. I KNEW the hair would grow back, it was just the act of seeing it fall out. Add to that that having her hair fall out makes it so much more "noticable" to other people. It wasn't so much I cared what people thought, so much as I didnt' want them to pity her. She is such a strong child I didn't want to worry about her being pitied. Silly I know, but still, it was hard to deal with at the time. This was also about the time that she started getting tired much more easily. It was heart breaking to see her try and keep up with her brothers and have to stop because she was "tired now".

It didn't affect her zest for life though. She kept that sunny attitude throughout this whole journey.

Chemo begins

Shaylee's chemo began with a ten week induction. Chemo once a week for ten weeks. Then a two week break, then chemo once a week for four weeks, then two weeks off for the rest of the time. The first time we went up to the hospital for an actual treatment was nerve wrecking. I remember being so afraid of what we were doing. What was it going to do to her physically, emotionally, mentally etc. Logically I knew we really didn't ahve a whole lot of choice, not really.

I remember the first time they accessed her port. I remember which nurse it was, which room it was, that it was overcast that day........ If I consentrate, I can even remember what she was wearing. I remember how Shaylee cried....how I didn't. I couldn't. I didnt' want to further upset Shaylee. I remember she got to order lunch, and she thought that was COOL! Once the accessing the port was done, she didn't fuss and cry again until it was time to take the tagaderm bandage off - big plastic monster! She hated that part for the whole 60weeks. Can't blame her.

The actual chemo process wasn't too stressful really. She had the IV hooked into her port, and we just took it around with us when we walked. We always packed our backpack full of color books, books to read etc. Funny, that bag has become a standard with us. Doctor appointment? Get the bag! Meeting at school kids have to go too? Get the bag! Soccer game? Get the bag! Its the same bag we take to each and every one of Shaylee's MRI's. Our motto? "Don't leave home without it!"

Shaylee did pretty good that evening of first chemo, but she woke up SO sick. Just broke my heart. We hadn't had the chance to pick up the anti-nausia meds, so James had to run and get it. I wanted to cry watching Shaylee get sick over and over. She took the meds when he got home and they did help. Mind you she didnt' take them very well from taht point on but she did take them that first time!

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Wednesday, September 17, 2003 7:58 PM CDT
Shaylee had her first Chemo treatment yesterday. She now weighs 29lb 9oz! wahoo! *grin* She did very very well! The nurse even commented on how well Shay did for being three years old. *PROUD smile* They put the "numbing" cream on the port site to help numb it up before they did anything. She did cry a bit when they did the actual port access, but I think some of that was fear of unknown more than anything. She stopped really quickly and was joking around in no time. We decided that the IV machine and pole needed a name. After all grandpa Dave had his "buddy" when he was in the hospital - which by the way REALLY helped ease her discomfort with it, she knew what it was from visiting him - and after much thought she named it "Chilly". So now she knows she'll have Chilly to walk around with when we go. She did awsome with the treatment and was so strong and brave I am amazed and proud. She is my hero.This mornning she woke up and was sick. Breaks my heart to see. She threw up a few times before we got the anti-nausea medicine from the pharmacy. She took the medicine like a champ - and it is BRIGHT GREEN! Then she took a nice nap until it was time to go visit grandpa and grandma. She hasn't gotten sick since we gave it to her, and she's eating like a sailor. *laugh* Which actually is fairly normal! Thank you all for your thoughts and prayers. They most deff. help and we can feel the prayer cover. Thank you!!

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Let me tell you about the process of each appointment. You come up, check in at the main desk of the pediatric oncology/hemotology clinic. Then you sit down and wait for your name to be called. During this time Shaylee loved to look at the huge fish tank, watch cartoons on the tv, ALWAYS -always always- get a drink from the water cooler until Nurse Kathy called your name. Then you go to the intake corner where you are weighed, measured, blood pressure and temp taken, along with the "how are you feeling?" and "are you in pain?" questions. After that, if a room is available, Nurse Kathy will walk you there and make sure you have what you need - do you have EMLA cream on (worth its weight in gold is that stuff)? How long? *EMLA is the numbing cream* Then you wait for one of the other nurses to come in and do the actual access. They access the port, first thing they do is a blood draw - the port allows them to do this, and then hang a saline solution without having to restick her. While the saline is drip drip dripping away, they run the blood work. They have to run the blood each week so they know how she's doing. They have to watch the white count, the plateletts etc. Then the nurse (or the doctor if he has time) will come in and let you know the results of the blood draw. Then the nurse goes to order the chemo. At some point after blood work the doctor comes in and talks to you. How are things going? How did she do last time? was she sick? Pooping ok? Head hurting? Walk on your heals..... that one is because the vincristine can cause the muscles in the legs to shorten a bit, thus causing kids to walk on tip toe. Once the doctors done and your chemo drip is hooked up your pretty much "free" for an hour or so. CAN NOT LEAVE the clinic, but you can wander to the play room, walk around etc. If you're "lucky" you get abed in the infusion room, where you have your own little tv, otherwise you hang in one of the exam rooms. If your there before 10, you get to order lunch and they deliver it to you around 11. Once your chemo is done, you get a saline and heprin flush - that keeps the port from becoming clogged and thus infected (NOT a good thing!). Oh yes, and once you get "stuck" for port access or blood draw you get to choose a toy from the toy box!


Shaylee's second appointment was one week after her first. Now that she knew what to expect she did so well. We discovered if Mommy held her on her lap, and we read a book, that Shaylee could focus on the book and NOT on the fact that little needle was sticking her in the chest. She impressed the nurses by not crying the second time. I was so proud of her, but I can tell you, as a parent it just killed me that we were having to do this each week. My heart ached, basically we were injecting her with something that was going to hopefully kill the tumor but at the same time, was making her so sick and could cause so many other problems.

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Wednesday, September 24, 2003 5:00 PM CDT
Shaylee had her second chemo treatment yesterday. She did AWSOME! She didn't even cry when they accessed the port. What a brave, strong girl she is! They did a blood draw (one advantage of the port, they can draw blood AND start the IV all in one poke!) and the results from that were good. We are aware however, that they may drop as of this weekend. Usually seem to drop, from what we've been told, about 10days after the first treatment. So we have to keep an eye on that. Plus we need to be sure she's having regular BM's - one of the side effects of vincristine is constipation. Joy.ANYWAY! Shaylee did awsome. I have some pictures I'm going to try and get up on the photo album if I can figure it out. HA! We played with her leap pad, and read some books. My mom is working to organize a bag/box to take in with us each week that will have toys or books or something to do. She figures that way friends and family that want to "do something" can. Isn't she a great grandma!?The nurses were so nice, they let us order her a lunch since we were there at lunch time. Just as lunch came a bed in the infusion room opened up (we were just in normal exam room) so she got to watch Stanely and Rollie Pollie while she ate. Double treat since we don't have TV access at home. She ate ALL her mac-n-cheese.When the time came to remove the needle from the port, she did cry. But that was because seh was so tired by then, plus taking that big ol' plastic bandage thing off HURTS, even if they do soften it up some w/ baby oil! She was very brave and continues to impress me with her spirit and strength. We gave her the anti-nausea meds before bed this time and she did just fine thru the night. She woke up in middle of the night, just in time for her next dose. We gave her another this AM (its every 6hrs) and she was a "little sick" but I think thats because she sat up too quickly. She felt up to going to the library this morning and eating a bite of lunch, but she's resting and watching a video from the library now. She's a smart cookie, she knows when to go and when to rest!Thank you all for your prayers and thoughts. I know full well that is what is making all of this bearable. I know we wouldn't make it thru with out your support and with out God helping us. Thank you each and everyone!!

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Many times in those first weeks I remember thinking HOW on earth are we going to get through this?! But from day one of this journey there have been two verses that have pulled m through. One is Romans 8:28 which says "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." The other was/is Jeremiah 29:11 which says "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." I KNOW we made it through the way we did becuse of Gods grace. Shaylee's journey could have been so much harder than it was. I saw other kids going through chemo each week who got much sicker. I KNOW kids who were going through the same protocol as Shaylee who had reactions, problems, feeding tubes......... I still hold strong to Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose" GOD HAS A PURPOSE FOR THIS. A REASON. There is no doubt in my mind, that Shaylee (and our whole family) went through this for a reason. There is SOMETHING He is going to use her for. At this point I don't know what it is, I may never know, but there was a reason for it. I know for me, my faith is what got me through. How families who don't have that faith do it, I don't know. There were many days I wanted to sit down and cry and yell "I CAN'T DO THIS ANYMORE!!" Many days I cried out to God to get me through....and He did. I really learned the 'value of a life' as Chris Rice says, life DOES "mean so much"