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!!!