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!

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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?! )