Sunday, November 04, 2007

New beginnings

Last evening, while I was trying desperately to avoid the bags of Skittles whining for my attention in the kitchen (I don't even like Skittles!), Amy sent me a stack of photos and a five page blogpost and I let out a big sigh: it's timmmmmmmmeeeeee!

I'm taking editorial license a bit and breaking this into a couple of posts, with the ending first. After you read THIS part, which is the wonderful news I teased you about last week, then you'll want to read the next post down, complete with pictures and the whole story of Sahara's journey to the finally revealed west coast location.

I dare you not to cry at least once.

We are finally home. It was a looooong trip, and Sahara was absolutely exhausted by the time we landed in St. Louis. Bless Shannon’s heart, he had a giant McDonald’s sweet tea waiting for me…how great is that??? Ohhhh, that heavenly nectar. LOL. And bless Pamela for sending me a welcome-home box of brownies that were nothing short of pure, blissful, chocolate goodness. And special thanks to my sister, Sandy, for giving me the gift of a spotless house to return home to (you are one brave woman…LOL).

We are trying to get as much rest as we can, while at the same time trying to get back into the swing of things. Sahara has so many challenges to face and hurdles to overcome. We were cautioned about the dangers of the surgery, of problems she could develop now or later, of the possibilities of unknown things to come. However, the alternative of NOT having surgery was not acceptable to us, because she was getting worse. We made a choice to be aggressive in her treatment, and we believe that we made the best decision possible.

She’s still being weaned from the hydrocortisone, and it will take a couple more months before she can (hopefully) stop taking it altogether. It has to be established that her adrenal gland is making cortisone on its own before she can stop taking it. Until then, they told us that she will fatigue easily, and could have more bad days than good. We just have to be patient as her body tries to rebuild itself.

As far as other treatment, we are in “watch and wait” mode. She is not on the antineoplaston treatment anymore. We will have MRI’s done every few months to see what’s going on with the tumor. With luck, it will not grow. Perhaps it will die and turn into scar tissue. All we can do is continue to pray.

She’s starting rehab in Cape again, fighting for that day when she’ll walk by herself. It’s going to take time - a lot of time. Brainstem tumors are one of the cruelest afflictions a person can have…they are evil thieves. They steal your abilities, your independence, your way of life. Everything that was so simple and normal, the things she did without thinking or giving them a second thought, all are now incredibly difficult. I can’t imagine what it feels like to be trapped inside a body that will not work. I know that it is so very frustrating…but somehow she keeps going. People still fall in love with her when they meet her. She’s still sassy and funny. She still gives Shannon a hard time!

And she is very, very glad to be back. SO AM I!!! Two years in a row, we have left Cape in summer and returned in fall. There’s no place like home!

It took me a long time to write this blog entry; I wanted to make sure that I didn’t miss anything, as so much has happened in the last two months. Thanks to everyone who keeps reading the blog, praying for Sahara, and keeping the faith that she will be healed.

And our eternal gratitude to Dr. Edwards, for keeping our dream, our precious girl, alive.

With love and new optimism,