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?!?

~*~*~*~

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!

~*~*~

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.