Back on....

I'm back, and going to try and be a bit better about posting and going back to visit the time when Shaylee was going through chemo. I figured it was time to get back to it, after all she's due for another MRI next week, and she's been OFF chemo over two years now! That's AMAZING to me really!

When I last posted, I posted about when Shaylee had been so sick. She'd had pneumonia, and was on breathing treatments etc. Thankfully they didn't make us stay at the hospital, but I know if they had we would have been very well taken care of. In fact, that's kind of related to why I'm back here now....posting again. The Jr high is launching a fund raiser this week, where they want to raise money for the hospital Shaylee received her treatment from. She and I are going to go to the assembly and participate. We are going to share about some of the things that make it such a great hospital. so here I am......back.

So Shaylee was begining her maintance portion of her chemo - four weeks on, two weeks off. We'd go up, get checked in, weighed and meausred, all those good things, get our room or area, do a blood draw, start the IV, wait for counts, order the chemo, hook it up, hang out for the drip, wait for it to finish, flush the port, take off the tagaderm (NVER EVER fun, the only thing I EVER heard Shay complain about in the whole 60+ weeks) deaccess the port, bandaid, grab a toy from the toy box, wave good bye and head out.........pretty basic right? Well, during the two weeks off Shaylee had her MRI to check on the tumors.

from email update:
Good evening friends and family,

And it IS a good evening! I'm not good at beating around the bush, so we'll jump right in! Shaylee had her MRI last Thrusday, which she handled like the champion she is. In fact they told me they wished ALL their peds patients were as good as her. *proud grin* She did really well, and insisted we stop for "chicken stars" at Carl Jr. on way home - she was fine!

Today we went in to restart the chemo, we're now on the maintance part, four weeks on, two weeks off. Shaylee did great again. The doctor came in and told us they had the MRI reports. The tumor has SHRUNK!! Yeah God! I don't have the paper work right in front of me, but I believe the numbers were about 21mm by 16mm in July and last weeks readings showed 14mm by 6mm. SIGNIFICANT change is what the radiologist stated. We are thrilled! Our hope was simply to stop growth, but it shrunk. All those prayers worked! Thank you all.

Now we continue on with the next 48weeks (or whatever we'll have left depending on counts etc). We've been blessed with proof that what they are doing IS making a difference. Shaylee is still her happy silly self. She's still charming the nurses and staff up there. She's still so very brave everytime we go for her treatments, and now we can tell her it is making a difference!

Thank you all for your prayers, friendship and support! This has been the best "Christmas Gift" we could have hoped for as far as news is concerned. I hope and pray that each of you is blessed this Christmas. Your prayers and support have truely touched our lives. THANK YOU!

What a blessing that was! I know there are a few of you out there (Lisa, Ann) who can understand the absolute JOY at work such as "shrinkage". I can tell you in complete honesty its a HUGE weight off to know that the nasty stuff you're puting your child through, all that junk you're forcing into their body, IS really doing something good; that it is making a posititive difference. I can't speak for anyone else, but I remember very clearly the feeling of relief that we were not doing this for NOTHING! That something was happening.

Christmas was coming, James had been out of work for so long, there was just no money for Christmas. We had maybe $20 we could spend on all four children. We'd decided we'd hit the dollar store and get each one $5 worth of things. I don't know how to convey how much that hurts, to know you can't really give your child a "good" Christmas. Not that there is anything wrong w/ having a small Christmas, or that there is anything wrong with buying things at the dollar store.....but these kids had already been through so much it just broke my heart to know we couldn't at least give them a nice 'big' Christmas.

But God was with us, and God was (and IS) so good to us during that whole time frame. We had a call from the church that a couple small groups (bible study groups) wanted to do something special for our kids for Christmas. Would that be ok? They asked for a list of a few things the kids would like, so we sent in a fairly generic listing..... We received a call saying the gifts would be in the office, we could pick them up after church on Sunday.

The only two words that can describe it was humble and awe. Complete and total AWE. An overwhelming level of awe. There weren't just one or two things for the kids, there were piles of things! Seriously, PILES!! Amazing, mind boggling piles. Heart wrenching, slack jaw inspring piles. Humbling piles of love and care, from people who did not want their names known, but wanted to share their ablitities, their love. Piles, that even now, four years later can reduce me to tears.

Somehow we got them stashed in the back of the van with the kids no wiser, got them home and got them tucked away until Christmas morning. I wish I had taken pictures of our closet, because there were so many gifts in those piles that when they were combined with the gifts from the kids AngelMoms, that James and I couldn't hardly get into our closet to get to our clothes. For a week or so, we had to simply pile our dirty clothes on the floor of the bathroom, because the hamper had been burried! Never has it been such a joy to go into a closet! Christmas eve, long after the kids were in bed, we got the piles and piles of presents out, and placed them around the tree for the kids.



Now, you should know, the ONLY things in those piles taht was from James and I were the stocking stuffers we used that $20 for.

Two Week Break from Chemo!

Shaylee had finished her 10 week induction....now she had two weeks without any chemo or any doctors appointments! Wow - that seemed wiered to NOT be going up the hill. This is the update from the email we sent out that week:
Sat, 6 Dec 2003
Good morning to you all, This will be a short note, I just wanted to touch base and let you all know howMiss Shaylee was doing. She had fun this week NOT going in for her chemo. It did seem a little odd to not have to hurry and go. We met daddy for lunch to'celebrate' instead.

All in all Shaylee isn't doing too bad. However she has a nasty little cold and acough that just isn't going away. This is a concern for a couple reasons. One being she is scheduled to have her MRI on Monday, and they don't do them if there is a cold usually. We could sure use your prayers that she clears up by Sunday night. Since this cold has held on this long, I know it will take lots of prayers to haveit gone in time. They only do peds MRI's two days a week, Monday and Thursday and I'm not sure at this point they'd have openings on Thurs. The other concern w/ this cold and cough, we've mentioned before, is it getting into her lungs.

Besides all that, we're hanging on. The other kids also have this cold/cough. I don't think anyone has been sleeping really well lately! James is keeping really busy with his job, apparently chocolate is a hot gift for Christmas. ;-D Thanks for your support and prayers!


I remember that cough that just wouldnt' go away. Poor Shaylee just was whipped, no energy. But she sure enjoyed going to lunch with Daddy instead of chemo! Everyone was coughing and hacking - was a case of wouldnt' do any good to isolate anyone because we all had that junk going on. But things didn't get better....

Sun, 7 Dec 2003
Good evening folks, So sorry to bother you so close together with our last note. However, we tookS haylee - and Drew, Narissa and myself - in to the Urgent Care today for her cough and congestion etc. Last night we'd noticed that her breathing was quick andshallow, as if she wasn't able to get a good breath. Not distressed, her skin wasn'tsucked into her ribs when breathing in, but still.

Long story short, after 4+ hours in Urgent Care, assisted by Grandma Wanda who cameto help w/ the kids (James was usher at Church and we really didn't plan on such along trip!), Drew has what they think is a type of asthma, Narissa has a double ear infection, I have bronchitis and Shaylee has pneumonia. They did a breathingtreatment w/ the nebulizer while we were there and it helped some. She was very brave and did the Xray w/o having to be held! Again, she impresses me with her strength. The doctor in Urgent Care was very kind, and VERY much on top of Shaylee's condition, she called up to OSHU and spoke to the oncall oncologist so they'd be aware of what was going on, then came and found me in pharmacy to tell me that they'd really like to get Shay's blood counts so they could make sure they were OK. So we trooped off to labs after that.

The doctor called before kids and I were even home to tell us that the bloodcounts were very good, that they, and the OHSU docs were pleased, but I was still to call the oncologist in the AM. They would call to cancel the MRI, since she can NOT be sedated when her lungs are compromised. So thats where we stand for now...in a holding pattern. I will update tomorrow or Tuesday, when we know a little more.

Please keep everyone in your prayers if you would. Shaylee is running around just as happy as can be, doesn't seem at all distresed by all this. For that I'm very very thankful! We are blessed with such wonderful friends and family. Merewords can not say THANK YOU enough.

Looking back - you know how hingsight is 20/20? - we really should have taken Shaylee up to OHSU, but I'm sure they would have admitted her and at that point I really don't know how I would have handled that. I think thats part of why we just headed to Urgent Care. Can I tell you how quickly you fast track and jump all the people who are there head of you when you tell the intake staff that your child is currently on chemo? WOW. I can still remember the two nurses that did intake on us - two very kind gentlemen. So here I come in with three kids all of us coughing and hacking. They ask about what brings us in, one starts the intake papers on Shaylee one on Narissa. They go to do Shaylee's heart/lungs and notice her port - just as I'm telling them she's currently just finished her 10 week induction. BANG! everything stops. Both nurses stop, the gal at the desk stop..."She's in chemo?" Yes. "ok, get them back to a room STAT and notify the doctor taht this is a priority case" ALL of us got shuffled right back into a room, no waiting in the waiting room with all the other poor sick people. I almost felt bad about jumping ahead of a couple dozen people, but I was so busy being thankful that they took Shaylee's condition seriously.

Its funny, now I know that we actually KNOW a male nurse who works in that hosiptals ER/urgent care on most weekends...but do you think I can remember if HE was one of the people on that weekend? Nope. I was so focused on getting my kids in. They were so sick, so tired of coughing, I felt like - well, like that elephant I mentioned had sat on me! We got back and the doctor came in and started with Shaylee, she asked all the right questions, asked who her oncologist was, did I mind if she called up and talked to them - find out how they wanted us to proceed etc. I think she'd done EVERYTHING w/ Shaylee before she even took a look at any of the other of us! Said they wanted to do an Xray of her chest at which point I started to panic. Not only because I KNEW it was serious, but because I had three kids with me, Shayee wasn't that old and the last time she'd had an Xray she'd FREAKED. I couldn't call James, he was in church....so I called my mom. This was another indication taht my mother deserves sainthood or something! She immediately came over to the hospital - in fact she was there and ready when I took the kids down for Shaylee's Xray. I had to go to a different room for MY check up, but mom was there and took care of the kids so I could actually focus on telling the doctor what my problem was.

I remember wondering HOW ON FLIPPING EARTH we were going to pay for all the meds when the doctor told me all she wanted us to take. I had already shelled out $40 co-pay...now I had four to six meds! Again, blessed by my mom we headed to the pharmacy where she said she'd cover the perscriptions. As I stood in line, the doctor came to find me asking us to head for labs after that....James called just after the doctor left. So I'm standing in line, my mom has the kids sitting in an area away from everyone and I'm talking to James telling him I have no clue how we're going to afford this, that I'd written a check for $40 which I knew we couldn't cover, that mom had offered to pay for the meds - Drew was being given an inhailer, as was Shaylee plus her antibiotics, Narissa's antibiotics, and my two....... He said to be sure to thank my mom, that we'd figure some way to pay them back. Get off the phone, the gal in front of me gets called up to the counter, and I wait for the next empty spot then head up when it opens. Happened to be next to the woman that was in front of me in line. I'm not paying any attention to her as they're explaining the different things to me, then the pharmacist goes off to fill a perscription and I hear the lady next to me say something about how they need to hurry up or something. I remember thinking she sounded very impatient - and in my twisted humor thinking she should try an ER trip with three kids, one of which is a kid on chemo and KNOW you can't afford to pay for things!

I get done and walk over to where my mom is sitting with the kids, and my mom has this gob-smacked looke on her face and has somethign in her hand...my kids are all looking at her with this "Huh" look. She opens her hand, and there is a $50 dollar bill in it. She then tells me that the lady in front of me in line, had over heard me talking to James about how this hit us out of nowhere and we weren't sure how we were going to pay for thigns, she asked my mom to please give me the money, but to wait till she was gone. By the end of this, I was IN TEARS (as was my mom). This lady who I'd thought was acting impatient, was impatient because she wanted to give my mom money, for us, without us knowing who she was. Talk about humbling.

We got over to the lab, where they rushed her bloodwork. I do remember feeling SO relieved that her counts were ok, that we didn't have to take her up to OHSU. I posted an update on caringbridge on the 9th that recaped things.

Tuesday, December 9, 2003
Week 2 off the 2 off weeks.
Last week went really well. Shaylee was able play all week and to go to school on Friday. The cough was still around and making life miserable. Well, Friday night/Saturday it seemed to get worse, and when I put my head on her chest to listen Saturday it sounded a little raspy. UGH. This put together with the fact that her breathing was quick and shallow sent up red flags all over the place.

Sunday AM we got up, and I had a small elephant on my chest and was coughing more than I had been as well. Knew mine had done its typical thing and gone into bronchitis. So James took off for Church w/ Thane (he, James, was ushering for 1st service) and Drew, Narissa, Shaylee and I headed off to Urgent Care. THANKFULLY we got there just after they opened and we really didn't have to wait too long. The doctor we saw was very nice and really good w/ the kids. Drew she thought had a asthma related cough, so we have an inhailor for him now. Narissa has a double ear infection, and is doing GREAT at taking her antibiotics.

The doctor was concerned about Shaylee, because of her immune system not being 100% with the chemo. She was very good w/ Shay. Listened to her lungs a couple three times, they were "wet/crackly" sounding, so we were pretty sure it was pneumonia. S he did a breathing treatment and sent us for Xrays. Thankfully my mom was available and came and sat with the other kids while I took Shay down for the Xray. Folks, I'm telling you Shaylee is my hero!! She sat sooo still and big and tall for her Xray. She didn't have to have mommy hold her, or anything. She even held her breath like she was supposed to! The tech was VERY impressed.

Long/short, she has pneumonia. So needless to say the MRI didn't happen yesterday. HOPEFULLY next week. We'll see. Shaylee is runnign around like she feels just fine. No fever or anything. So we're keeping an eye on her, and will check in w/ her oncologist at the end of the week. She's due in next week to start her maintanance stage. We'll see how it goes.Thank you all for your continued love and support!


I'm going to go ahead and include this other upadate I'd sent out on Dec 16th so that when I next post it should be week 13, when Shaylee started BACK on chemo....but this is one I sent out after we had been to visit yet more doctors......

Tue, 16 Dec 2003
Update On Shaylee
Dear friends and family,

Thank you so much for your prayers and support during the last week and a half. Thankfully Shaylee is finally on the mend. However, I think we should qualify forsome type of 'frequent visitor' discount at the clinics. HA! Almost 10hrs in seven days. Blah! Poor Shaylee started crying and telling me her ears hurt last Thursday, since we were out, we called the clinic and got her in - sure enough she had a HORRIBLE double ear infection. Bless her heart! So they gave her one of the superduper antibiotic shots, and we went in the next day for a follow up. She'd justfinished the meds for the pneumonia, so they gave us a different perscription forthe ears. She is SO good about taking her meds. Because of the pneumonia the MRI was put on hold till we got the 'all clear' on her lungs.

When we went up to OHSU today, they checked her ears, and the right one is still alittle red but MUCH better than it was. Her lungs sound pretty good, so we are onfor the MRI on Thursday. They had origianlly schedualed us at 7:40 check in, 10:00scan. Mind you she can't eat after midnight so I was NOT looking forward to that! However, they called to see if we'd mind coming in earlier since they had somone cancel. NO PROBLEM! So we'll be there at 6am, w/ a 9:00 scan, much easier onShaylee.

We'll plan on starting the chemo again next Tuesday. Please pray that it goes fairly easy for her, and that she's feeling better in time to enjoy Christmas. The first week is usually pretty hard on her, and she's usually pretty sick. We are really praying that she bounces back and is ready to enjoy the Christmas festivities.

Thank you all for your prayers and support. You are all wonderful and we are so blessed to have you in our lives. Many many thanks!

Happy Holidays and Merry Christmas

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!

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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

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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!

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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?! )

Avoiding week 7b

*Sigh* I've been avoiding this blog. I really have. November 2003 seems like it was just last week and I get really anxious when I really think about it. I mean beyond the "oh yes, in November of 2003 Shaylee had started chemo" thinking of it.....I mean if I stop and think about how she was doing. Part of me HATES thinking about it. It just brings back all the fear, the anxiety, the unknowns.......

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Tuesday, November 4, 2003 9:57 PM CST
Wahooo! Week 7b is done and gone! Shaylee's counts were back up this week. Not super up, but up from last week, so we were able to proceed with her week 7 treatment. Once again she did really well. We got to work on her special bead necklace today!! Guess we were supposed to be putting one together from day one. . . so it has special beads for different things in her treatment. She got one for the MRI, one for having her port put in, one for the nasty reaction to the codeine, one for each time they access her port etc. Makes a neat necklace!! We'll have to get pictures soon.

Saturday we had a "NO MORE HAIR DAY" party! Shaylee, Daddy, Uncle Jeremy, Drew, and Thane all got their heads shaved! Complete with cake and everything! I think everyone had alot of fun, and Shaylee sure seemed to roll with everything. Having no hair doesn't seem to bother her very much. I'm thankful for that.

(Shaylee's hair had been thining ALOT lately. It had reached the point we didn't brush it if we didn't have to, because when you brushed it, you got a handful of hair. I hated it. It broke my heart to brush her hair. But we knew loosing it was a cost of hopefully saving her sight and we HAD to do it. So we strove to build it up. We talked about all the pretty hats that were out there, the pretty scarfs. James and the boys had decided if Shaylee was going to loose her hair, she wasn't going to do it alone. James' brother Jeremy said he'd shave his head as well, and thus our idea of a "No More Hair Day" party began. I know some people thought we were crazy for celebrating something like that, but you know what? She was THREE and going through hell, we figured we'd celebrate any darn thing we could! But it was hard.....at least on me. I simply wanted to curl up in the corner and sob, this was proof. Hard, concrete, visable proof that she was sick, that something was wrong. Now strangers would look at her and KNOW something was "wrong". But I couldn't cry......we had family in for the party, the boys were so excited to be doing this for their sister, and I was so flipping proud of them FOR doing it. Recently, when I was meeting with Shaylee's kindergarten teacher, who'd had Thane in her class that year, commented on when Thane came back to school with his head shaved and told her he did it because his sister was loosing her hair to chemo - - and it was all I could do to NOT cry even now...three years later)

On that note, we got the most wonderful suprise package today! The ladies from the PALP board I post at sent a box full of hats for Shaylee! Pink hats, blue hats, purple hats! Shaylee was just amazed at all the "beautiful hats for me!", and me, I'm amazed at these wonderful ladies! A big huge thank you to each and everyone of them.

(These ladies ROCK!! I met most of the ladies on the PALP borad back before Shaylee was even born. We met under tragic reasons - we'd all suffered a loss, a miscarriage, the loss of a child...something. These ladies provided support when we had our miscarriage and then when we found out we were pregnant again. They got the "silly" neurotic fears you go through when you've had a miscarraige and become pregnant again. They were AMAZING support when Shaylee was diagnosed and came up with the "hat party" for her. There were so many neat hats in that box! I should tell you, I have never met a single one of those ladies in person....in "real life", and yet they went out of their way to support us with this wonderful gift. Shaylee still has each one of those hats, they are too special to get rid of just yet)

Don't know much beyond that. Hopefully Shaylee will feel good tomorrow and not be too tired. She's doing really well at taking naps when she needs to rest, and not 'over doing' things. I continue to be amazed at her strength and ability to handle all of this. The nurses today commented on how well she is doing with all of this. They were different nurses than we see usually but they both commented on how "well" Shaylee was doing and how brave she is. I know that its because of the strength God gave her to get thru all this!

(The nurses were always so amazed at how Shaylee did. I remember one nurse commenting at how Shaylee was an "old soul" in that she took everything in stride. We were always quick to correct them and tell people she does as well as she does by GODS GRACE, He GAVE her the personality he did for a reason. To make it through.)

Thanks to everyone for their continued prayers and support. Again, a HUGE thank you to each of the ladies who sent Shaylee the box of hats. My eternal gratitude!!! You gals are the best.

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We were blessed with very supportive friends and family through this whole journey and I will forever be greatful to all the people who supported us. We were very very blessed by people from our church who would make us meals for the days we had chemo so I wouldn't have to come home from the hospital and have to "figure out dinner", so it would be one less thing to worry about. I can tell you in complete honesty some days those meals saved my sanity! Simply KNOWING someone else was taking care of it! I was having to make so many BIG decisions that the little ones, like dinner, sent my mind into panic.

I couldn't sleep the other night, I don't remember why, but I do remembe thinking I needed to include this one thing in this blog. When you know someone going through trials like this....be careful how many times you tell them how strong they are. Really, what other option do they have? To throw themselves upon the ground screaming, crying and cursing? To complain? Does that accomplish anything? Does it help? Will it make their loved one better? NO.
I got so frustrated being told how STRONG I was, how well I was handling things.....it got to the point, where I honestly didn't feel I was ALLOWED to be upset, to cry. If I did I'd be letting ALL THESE PEOPLE down! I'd be dissapointing them. Twisted I know, but there is alot of pressure to "be strong" when you go through things like this. I seriously got to where I wouldn't let myself be 'weak', to cry. After all (and I do feel this way to some degree), if Shaylee doesn't complain what right do I HAVE to complain??? SHE was strong. She had the strength, and the grace, and the courage. Me, I was simply along for the ride by Gods divine plan.
Recently someone commented on how strong we had to be to get through this, and I told them "no, we're not strong, I'm not strong. GOD IS STRONG, and I'm reliant on GOD." Because I KNOW I wouldn't have made it through without Him. I had to lean on HIS strength. His mercy. His grace. His guidance. Choosing to put chemicals that destroy things into your childs body is an incredibly hard decision. Knowing that by deciding to do that you may be taking away your childs reproductive rights - that those chemical which will kill the cells in the cancer, the tumors, that may well save their lives, may also well decrease - or even take away- their ability to have children of their own.......KNOWING that is a huge weight. One that still weighs heavy on my heart.

But I'll let you in on a secret....I pray continually for my all my childrens future spouses. Each and everyone of them. Four people I do not know yet; two men and two women. And in Shaylee's case, I pray for a Godly man, who is willing to look beyond her phsyical imperfections - beyond those spots, and marks that are all over her body - and see the beautiful person within. I pray for a man who has a heart from God, who can accept Shaylee and her possible limitations, including not being able to have children. I've prayed, knowing I don't know this mans name......but (and this is my secret) God has placed a name upon my heart...a specific name. At this time I only know one person with this name. And this is an older brother of a friend of Shaylee's. Someone she GUSHES about in the typical way of a five year old when big brothers take the time to play with them. She adores both the older brothers of this person.
The "funny" thing was I had just been praying in regards to this other family, that they would continue to be a positive role in Shaylee's life and friendships, and I had been praying VERY specifically about something -about Shaylee's future husband- and I can not explain it but this name came into my head, and into my heart with such a SURE feeling and such peace that I know it was from God. To some this may sound really really wierd or "out there" or super "CHURCHY"....and to you I say "Oh well, sorry you see it that way" because I won't appologize for being sure God placed this on my heart! I cant' explain it, but I have more of a peace about the fact that Shaylee may not be able to have children, because if it IS the one person I know with this specific name . . . his sister, Shaylee's friend is adopted (she actually has two or three friends that are adopted - not that it matters *L*). So I know that IF it was this young man, that at least adoption is a known entity in his life, and yes, that brings me comfort.

Boy, I kind of went all over the board on this one! But I needed to get some of it out, and this is someplace I can. I know that no one else probably reads it, but I do, and I guess for me its cheap therapy! :) What can I say, LIFE MEANS SO MUCH!!!