Thursday, July 24, 2008

You might need a tissue for this.

Here is the story behind the song. ETA... this is anAustralian band called Hillsong. :0)

Wednesday, July 23, 2008

No major updates, just some random thoughts

Chet's next appointment is in September, and I expect we will hear more about when they feel it will be good to go forward with the transplant at that appointment. Chet's immediate plans are to finish his pottery chess board, enjoy the rest of this summer, and get back to school in a few weeks. He has grown again, and is increasingly getting skinnier. I really can't tell if it is just because he is growing, or because his appetite is decreased or both. He is tired all the time too, which can also be attributed to growing and to the disease. I have been making a point to make a lot of his favorite foods so he will eat more. That helps with both the weight and the fatigue.
He has been asking us questions about the transplant. He knows that when he goes through the chemo/radiation treatments he will probably lose his hair. He hates that idea. He isn't particularly vain, but he likes having longer hair. We offered to get him a Dolly Parton wig. He gave us one of his wonderfully smirky looks.
We were talking about how his blood type would change the other day too. He is A+ and will become O+ after the transplant. Jack was teasing him and telling him he might grow curly hair and chocolaty brown eyes like Todd too. Of course, that won't happen, but it really did make me think about the wonders of this Creation business. After the transplant, my understanding is that if you were to compare the DNA in Todd's blood and the DNA in Chet's, it will be the same. How amazing is it that the DNA can change or take over that way, and yet a person still retain all the physical attributes that came in his own DNA. We actually talked about that, and it was mentioned that their kids could end up looking an awful lot alike, and genetically appear to be Todd's. What I didn't mention to Chet, though, is that the last time I really looked into the transplant procedures, one of the side effects of the chemo/radiation is that he will most likely become infertile. And that breaks my heart. The thought of it caught me off-guard and left me quiet for a few minutes. I know there are other options, but that doesn't make it less sad. I really need to ask his doctors about it, though, and get a better and more accurate explanation.
Before we do go for the transplant, there will be lots of things that need to be taken care of. One of the things we will definately be doing is throwing a huge Can't Wait Till You Get Back party for him before we go. We will be inviting everyone he knows. I will let you know more when we know more, and hope all of you who have been on this journey with us can make it.
Connie, he didn't get to go camping. The biting insects were out in full-drive, the bites of which cause infections he has a hard time fighting off, and he was sooooo tired. He did advance in rank in scouts last week, though, and is continuing to earn all the badges he can in the meantime. The good news is that once he is cured he can go back and finish all these things he hasn't been able to do.
In the meantime, Todd has enjoyed his semi-celebrity status. He particularly enjoyed telling Chet between giggles the other night , "If you want my marrow you better give me all your cookies." To which Chet promptly laughed and said,"I'm not giving you my cookies, they will just hold you down to knock you out to give me the marrow." There isn't much that makes the stress of waiting and seeing better than knowing they can laugh about this.
So here is my specific prayer list regarding Chet at the moment:
That he remain stable and not experience anymore close calls or pain.
That he not develop anymore of the serious conditions this progressive disease will eventually cause if he doesn't have a successful BMT.
That Todd remain healthy as well.
That the doctors use discernment and compassion while treating them both, under the guidance of our Heavenly Father who is the Great Physician.
That all of us remain positive and hopeful to better help them both recover quickly.
That ultimately Chet will receive the cure he has been praying for.
That the treatments and results that Chet experiences helps the scientists discover cures and therapies for this and other bone marrow failure diseases.
I haven't written poems in years, but I have had one knocking around in my brain for a couple of weeks. One of my goals this week is to actually get it written down. Maybe I will do that this week. I might post it if I do. No guarantees, though... lol.

Monday, July 14, 2008

This just in

My phone just rang, and it was Martha calling to tell me that it looks like Todd does indeed match Chet. I am beyond words right now. I will post more later when I have a better handle on my emotions. Thank you for all the prayers.

Friday, July 11, 2008

No word

We were hoping we might hear today if the test results were back, but we didn't. We are trying to be patient. Maybe Monday will bring some good news.

Tuesday, July 8, 2008

Still waiting

We haven't heard anything yet about the test results. Hopefully we will by the end of the week.

Chet is feeling very fatigued this week. He has been sleeping very late, going to bed earlier than normal, and taking naps. I wish I could just infuse him with some of that energy he should have. He wants to go on his BoyScout campout this weekend, and we just don't know if he will be able to.

He did get to start his pottery classes last week. I am so grateful he has something to do that he really enjoys and doesn't wipe him out!