Week 9 & Week 10

Wednesday, November 19, 2003 11:38 AM CST

Week nine is done and gone. At least the treatment part of it is. Hard to believe that if all goes well, next week, week ten, is the last week of the induction stage of chemo. Then we will have two weeks off, and do the MRI during the week of 12/8.

Shaylee did really well again yesterday. I am so impressed with her. She is so brave and such a good spirited kiddo! The nurse who does the weigh and measure just adores her - ok, ALL the nurses do - of course! She always tells Shaylee how sweet she is and how cute she is etc. Yesterday she told us Nurse Rea had already picked Shaylee, she saw her name and immediately put Shaylee on her chart. *GRIN* Not too bad when the nurses "fight" over who does get to treat your kid!! Not a good thing when they fight over who DOESN'T treat them, huh?

(Shaylee adored Nurse Kathy, the gal that did the check ins. Each week she went through chemo, Shaylee wore a temporary tattoo, so each week she'd step back for weigh/measure and Kathy would look for, or at the tattoos. It was part of their routine. Same with whichever nurse was Shaylee's primary for the day. It got to be some of the nurses would stop by her exam room or her bed in the infusion room just to see what type of tattoo she had on. The nurses loved Shaylee because she always had smiles for them, she always was happy to see them. In that line of work, I can imagine sometimes the small children HAPPY to see you is few and far between)

We also got to talk to a nursing student yesterday. She was doing a question/answer type of thing on support and how well informed we felt about Shaylee's condition/treatment. Not sure how much we actually were able to help, but it was interesting. I told her we were really blessed with having such a wonderful supportive group of people, both here in 'real life', and online. I know we're blessed!

Shaylee does have a nasty cough, so PLEASE pray that it just stays a cough and doesn't settle in her chest. Dr T listened to her lungs yesterday and said all sounds ok now, to keep an eye on her. Lord willing it will remain ONLY a cough/cold. We did get the "OK" to treat the cough w/ cough syrup. At this point in the game I'm not giving her anything that doesn't have the official "OK".

(I remember this cough. It was the first one she'd really had since starting the chemo. It wasn't just a little "tickle" cough. It was, as I said .. .. a nasty cough. I can remember being so anxious about it...Was it serious? Should we be worried etc. )

Thanks again for all your support, prayers, thoughts and notes! You folks are all the BESTEST of the best!

~*~*~~*~*~

Tuesday, November 25, 2003 9:38 PM CST

We made it!! Week 10 is done and gone!! YIPPY! ~Happy dance~

Shaylee did so good today! In fact, we decided she's done so good lately she deserves another "Lion" for her necklace that we're making. Now mommy just has to get it caught up! She only had a few tears (very very few!) during the access of her port, and then she was GREAT! I'm telling you, this girl is my HERO! Her counts were down a bit, but that's because of this silly cough that is holding on.

(Hitting that ten week mark was so scary. The weekly trips were done yes, but now we were officially into the maintance stage......The meat of the treatments. But Shaylee, being Shaylee rode it like a champion. By this point, we were learning to read Shaylee so we'd know how her counts would be. When she was fussy, tearful, tired, bruising easily we knew the counts would be down. This week I remember her blood counts WERE down...Not enough to delay things but enough to keep an eye on - again related to that cough. They'd listened to her chest again but said it sounded OK. )

Next week we have NO, read it, NONE-ZIP-ZILCH-NADA-ZERO, medical appointments on the schedule for Shaylee!! NONE!! Wahooooooo......The only thing the week after that is her MRI, which we have to be there at 6am for a 8am appointment. UGH. The paperwork is in for her sedation for that, so should be fairly easy on her. HOPE! Then the week of December 16 we are on the maintance schedule - four weeks on, two weeks off.

(We were both looking forward to, and dreading the two weeks off. Looking forward to the freedom that came with it, but dreading it because, well, you become dependent almost on those appointments. They are routine. You KNOW you'll see th doctors and they'll keep a close eye on your child, so if anything is wrong they'll catch it. Plus we were coming up on what I remember as one of the first MRI's with sedation. The thought of actually having anesthesiology put her to sleep was a bit of a nerve wrecker! Part of that was not knowing what to expect and part of it is simply being a parent whose child has to have yet another medical procedure. )

I do want to thank each and everyone of you for your thoughts, prayers, cards, notes, gifts, support. I'm not sure we would have made it thru with this shred of sanity we have left without you!! THANK YOU. Please know that you are ALL on my list of things I'm thankful for this year!

Have a wonderful Thanksgiving!!

~*~*~~*~*~

Next posting - the two weeks OFF chemo!

Relay for Life

I wanted to stop a moment and share some pictures from the last two years worth of Relay For Life that we have participated in. Last year we walked in Newberg and this year we walked in Sherwood.

In the pictures from this year, you'll see Shaylee's "In Honor of" bag we made for her. You might notice the butterfly, and the quote "She's a butterfly, God bless the butterfly". This is a quote from what we've deemed "Shaylee's Song" - "She's a Butterfly" by Martina McBride

She's A Butterfly - by Martina McBride
(CD: Martina)

She remembers when she first got her wings
And how she opened up
the day she learned to sing

Then the colors came,
erased the black and white
And her whole world changed
when she realized

She's a butterfly,
pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows
she's so glad to be alive

She's a butterfly
Like the purest light
in a darkened world
So much hope inside
such a lovely girl

You should see her fly,
it's almost magical
It makes you wanna cry,
she's so beautiful

She's a butterfly,
pretty as the crimson sky
Nothing's ever gonna bring her down
And everywhere she goes
Everybody knows
she's so glad to be alive

She's a butterfly
God bless the butterfly
Give her the strength to fly
Never let her wings touch the ground
(God bless the butterfly)
God bless the butterfly
Give her the strength to fly

Never let her wings touch the ground
Oh, she's a butterfly,
pretty as the crimson sky
Nothin's ever gonna bring her down

And everywhere she goes
Everybody knows
she's so glad to be alive
She's a butterfly
She's a butterfly
She's a butterfly
God bless the butterfly
Give her the strength to fly
Never let her wings touch the ground
(God bless the butterfly
God bless the butterfly
Give her the strength to fly
Never let her wings touch the ground


The very first time I heard this song, I was in tears. To me, it spoke so much of Shaylee. Of her journey through chemo, of her starting to "live again" after she finished. It just FIT. The first time Shaylee heard that song she fell in love with it. Those of you who know Shaylee know, she's always had a love of butterflies. Her words when she heard the song were "Mommy! That butterfly song...thats ME!" No one told her, no one shared with her the feelings we had about that song, she just KNEW. To this day, she has supersonic hearing about that song. She can be in a completely different room, but that song comes on and she comes racing out to sing and dance. Without fail.

Isn't it amazing how a song can touch our hearts, and sometimes even SPEAK our hearts?

God bless the butterfly.

Quick Look Back

I just had a need to post these pictures. Its a look back at Shaylee over the last four years.
All these pictures are from around July of each year.

Meet Miss Shaylee - Spring/Summer of 2002. Look at those big blue eyes! From this angle its hard to tell but if you look close you can see the slight difference in the size/shape of her left eye. She was right around two years old in this picture. This was before we had the official diagnosis of the tumors. Those came December 31st of 2002.

Miss Shaylee of July 2003. So she would be right about three years old. In this picture, approximately one year after the other one, you can see more easily the difference in the size and shape of her eyes. This was taken the summer before Shaylee started her chemo. Chemo started in September of 2003.

Miss Shaylee of 2004. *SIGH* This was during an inpatient trip to the hospital. I can give you an exact date for this picture. July 17th. Shaylee had popped up with a few "bumps" that had us concerned about chicken pox, we ran up to clinic on the 15th they didn't think it was - no fever etc. The 17th she spiked a fever of 102.2 - anything over 100 earns a trip to the hospital...so off we went for a sleepover at the hospital. NOT the best picture ever taken of Shay, but you can see she thinks its a fun adventure (more on that one to come in another post)

I had to include this picture as well for 2004. Its just so SHAYLEE! This one was later in July when James' dad had come out to visit. No hair, not feeling too good, but still got enough attitude to make faces at people "just because".

Miss Shaylee of 2005. Chemo was OVER by this point! She'd finished November of 2004. As you can see, her hair was coming back in, and if I can find another "good" picture I'll post it so you can see how much better her color was!

Miss Shaylee of 2006! Twenty months post chemo. Head full of hair, color in her cheek and a smile on her face!

Moving on to week 8

I've noticed it seems to be taking me about a month to get one or two posts in. Wonder what that says about me and this process? :-)

This first part of the posting is actually another part from 7b - but since I got a little wordy there last time I figured I'd stick it here rather than overwhelm with the last post!

~*~*~*~

Thursday, November 6, 2003 6:04 PM CST

Well, this is the first time I've updated TWICE in one week. What a surprise to actually have TIME to do so.

Shaylee did really well with her treatment on Tuesday, however she woke up sick really early Wednesday morning, and was that way for the rest of the day really. Poor lil thing, we couldn't' keep ANYTHING in her. Including her anti nausea meds. So we had to resort to the suppository kind. BLAH! However it did allow her body to absorb the medication and eventually she was able to eat some chicken nuggets. By dinner time she was feeling much better. Today she's back to tormenting her sister and brothers! YIPPY. I'm glad to see it.

(I remember how sick Shaylee was this time. Because her counts being down and not having chemo for a bit her body wasn't prepared for the WHAM they gave. I can remember feeling such helplessness when the Zofran wouldn't stay down. Thankfully she hadn't reached the point that we couldn't use the supossitories yet - after the induction stage the immune system has taken such a huge hit, you don't dare use them due to risk of small tears and infection. I've said it before, and I'll say it again and again, God blessed Shaylee with an amazing personality. Here she was SOOO sick, and she always made a point to have her "sick bowl" with her, to use it. She never fussed or got upset that she was sick, even when the poor thing had NOTHING in her stomach to throw up. It is a terrible thing to be so helpless....to not be able to "fix it". And it is SO good to see that little face smile again and start bugging others!)

I do remember her very first chemo effecting her this way as well. . . perhaps because the last few weeks were Vincristine only, then last week having NOTHING, her body had to readjust to the whole thing. I don't know! Hopefully it wont hit her so hard each time we have the two weeks off during the maintance stage. That wont be fun for sure!!

I don't remember if I said anything, but Drew is coming with us next Tuesday for her treatments. He has wanted to come, and has been very interested/concerned in what happens to her during the actual treatment. I think it will be hard on him to see it, but at the same time it will be GOOD for him to see it. No more worrying and wondering about what goes on. He'll KNOW. He's also very excited to get to be her "support" that day. They don't have school anyway, so no worries there. Although we had told him that we would schedule one in the afternoon and pull him out if we needed to, so that he can go.

(It was very important to us, that the boys get to go up for Shaylee's chemo. For them to see exactly what was going on. Especially for Drew because of his tendency to worry about things. He needed to see that the nurses were taking care of Shaylee, that she really wasn't in pain at the time of treatment. That she wasn't attending some fun roaring party either!*L* It worked out very well with having a day off, although I seriously would have pulled him from school if need be.)

that's about it. Knew people were wondering how Shaylee had been doing so thought I'd update again. If you missed it feel free to go back and read the other update...it was on Tuesday! Take care all!

~*~*~*~

Week 8 was the week that I started sending out email updates as well. There were enough friends and family who for whatever reason don't navitage the web, that we decided it was just as easy to do both. Usually, the two were the same or at least similar, but at times I did put different info into the email. I'm trying to figure out how I'll include both, and keep it clear which is which here. I might simply put both in one posting and just use different colors.....I'm really not sure, and since I'm pretty much the only one reading this, I guess it isn't hugely important! :-P

~~*~~*~~*~~
EMAIL UPDATE:
November 12, 2003 9:22 AM
Good morning friends and family,

Thank you for allowing me to intrude on your lives once again with news from our section of the world. We made it through week eight! Two more weeks and the 'induction' period will be done, we'll have a two week brake in which to get the MRI, and then on to maintenance period. The maintenance stage is four weeks on, two weeks off, repeat. After three cycles we'll do another MRI, and so on, and so on!

Now then! Shaylee did really well again this week. She continues to be my hero and amaze me with her strength. Drew came with us this week to her treatment. He's been wanting to know what is going on, and since they didn't have school yesterday, we took advantage of it. He did really well, although he didn't want to watch while they accessed her port. He found out that it really isn't anything too exciting, that nothing super fun happens, and it involves ALOT of waiting! He was lucky though, we actually got a TV this week! Otherwise he would have been SUPER bored!

(Drew was really funny about the nurses accessing Shaylee's port. We use the numbing cream, so she doesn't really feel it, but we discovered Drew's rather squeamish about needles, and poking people! He decided looking at the paint in the corner was a great idea. Poor kid! We didn't get an infusion room that day, but the TV/VCR/Game combo helped. We watched a couple movies and Drew was good sport and put up with Shaylee watching the Clifford movie they had. Shaylee shared her lunch with him, which thrilled Drew. I remember him telling me, "boy, you don't get to do much do you?" nope! ALOT of waiting!)

Shaylee's blood counts are back up! Thank you Lord! Her white count was back upto what it was in week two or three, her red count is hovering right where it has been for the last five weeks or so. Her platelet however took a big jump up,l ast week they were at 365, and this week 407. MUCH better than the 155 they were a month ago! The one that caused us so much concern and to for-go chemo two weeks ago, the "GRAN" -which has to be above .5- was up to 1.3!! YIPPY Much better than the .2 don't you think!? She's had a bit more energy, doesn't bruise as quickly, both signs her blood counts were up. She's doing great. Her cough seems to have pretty much eased away, unlike her poor brothers. While concerned for them, we are very relieved hers isn't sticking around. Pneumonia is a major concern because of the lowered resistance and immune system. Which reminds me, no one got back to me about the antibiotic yesterday, better call!

(Ahhh yes, the blood counts. I swear it was like the lottery every week. How would the numbers come back? Up? Down? Would they be high enough to proceed this week? Low enough we'd be under house arrest? The GRAN, or absolute nuetrophil was the big one. That was the one, I mentioned that had to be over .5 to proceed. That's the one that indicates the ability to fight infection. If it gets too low we couldn't be around people for fear of infection. As it was we had to be cautious anyway - wiping carts down if we went to the store, wiping toys down at school, etc. A simple cold could turn into a trip to the hospital. I'll never forget the snarky woman at Target one time. Shaylee's counts were starting to dip down, so we were wiping the cart down - you know the kind that hold two kids? (invented I'm sure by some harred mother!) This woman looks at me and tells me "you do realize thats pointless don't you? They're still going to get colds!" I remember the snooty voice she used as she gave me this look of "Duh you idiot, they'll get colds" - it made me SO flipping angry! I just looked at her, looked at Shaylee and so wanted to burst into tears, but I just looked at her and told her, "yes, but what's just a cold to you could put my child in the hospital, so I'll just keep on being pointless" and kept wiping it down. The look on her face was ......"Oh - crap!" I think she mumbled a sorry but I don't remember really. I so much wanted to simply load my girls back into the van and cry. But I couldn't. It wasn't allowed. Crying would have upset the girls, because they didn't understand why mommy was upset........People just don't think. They don't have the experience or the exposure to things, so I KNOW they don't know but still! *tangent over*

By this point we were learning to watch the 'bruise factor'....The more bruises, the easier Shaylee bruised indicated her blood counts were going down. Its a good thing her HeadStart teachers were well aware of things or we would have been turned into child services for sure based on the poor girls bruises! We also had to really watch her cough. All four kids had some cold or cough and I can remember the FEAR that Shaylee's would turn into something else. She was supposed to go on Septra as a standard long term preventive antibiotic. )

that's about all that I know. We're still waiting on the high school job James interviewed for. He did get a call back from someone up there, but when he called them back they'd left for the day, and well, yesterday was a holiday so no one was in. So we're hoping to hear today. Not sure what it means...They usually send a letter saying "Thanks but no thanks" when they don't want you right?! Keep praying if you would!

Thank you each for your prayers, thoughts and support. We are so very blessed to have such a wonderful supportive group around us. God has really blessed us. May He bless you as well!

~~*~~*~~*~~

I think I'll skip the caringbridge journal at this point. In this particular case the two updates were VERY similar and I don't' see the need to repost the same basic thing. I will try to get the next few weeks updated SOONER than one month! No promises but I will try (I wonder who I'm talking to when I say that since I really don't know of anyone else who reads or looks at this! *L* Maybe I just like talking to myself...Its therapeutic right?! )