Saturday, September 15, 2007

High voltage

Sahara's world is expanding rapidly, and she's doing so well, Amy was able to jump on the laptop to update all of us. The last few nights, her phone calls have been crackling with energy and joy. Tonight, y'all get your own dose of Aldridge-Power.

One more thing--some of the parents of kids who are fighting similar tumors have asked for information on the surgeon. This will be revealed soon--we want to shout his wonderful name from the rooftops. If your child has a website or blog and I can contact you privately there, then send me an email and I'll see if I can help. All I ask is that you maintain Sahara's privacy until she and her parents decide to go public.

Hello, everyone!

WOW...thank you all soooo much for your prayers, wonderful posts and constant support. We are so blessed to have all of you thinking of us and helping us to keep going! I'm so grateful to Pamela for taking my babbling phone calls and turning them into great blog posts for me. :)

Last night, Sahara was taken off the ventilator and began breathing on her own immediately. She has not had any trouble at all and truly looks better and better all the time. This evening she was finally able to have something to eat, and she was really happy about that, considering that she hadn't had anything since Tuesday evening! She has to start slowly, with pudding and jello and juice, but she was glad to have it. She says that the orange jello from St. Francis is still the best, though! LOL!

The transformation this week has been nothing short of amazing. When we arrived here on Sunday, she was so tired from the trip...and all of the testing she had on Monday and Tuesday exhausted her even more. This will be hard to believe...but she looked better after the surgery than she did when she went into the operating room. She was a bit swollen, which was expected, but her face already looked more symmetrical. It was so weird...and exciting. When we saw the before and after MRI's side by side on the computer screen, it literally took our breath away. So much of the monster is now GONE...eradicated. Outta there! Her brain already appears to be compensating and healing, with the areas that had shifted moving back to where they belong. It's more than we can begin to comprehend.

Now, two days post-op, she has stunned everyone here with her strength and progress. Her eyes are bright and wide open. She can drink through a straw with the left side of her mouth. People, she could NOT do that on Tuesday...only the right side was working. She can lift her weakened right arm at the elbow now instead of having to move her shoulder to shift the whole arm. Her lungs are clear, her vital signs are strong. She's giving Shannon a hard time already. It's wonderful. LOLOL.

She even had her first rounds of physical and occupational therapy today! She really got a workout, and we're so proud that somehow, SOMEHOW, she still has strength in her limbs. We just have to get them working in sync again. They were very pleased with how it went with the exercises.

We are still waiting on an array of pathology to come back...lots of tests are being performed on the tissue to determine exactly what kind of tumor has been haunting her for 15 months. We know what it is is NOT a glioblastoma multiforme, grade 4. I won't go too deeply into how I feel about that right now...but suffice it to say that I am LIVID at thoughts of an initial misdiagnosis, continued misdiagnosis, the wrong clinical trial...chemo and radiation geared toward GBM...a tumor that was called "inoperable" keeping residence in Sahara's head for well over a makes me sick. Absolutely SICK. Shannon and I keep shaking our heads...and hating all of this...but now we must continue doing what we have always done...MOVING FORWARD. With more hope now than ever!!!

Our surgeon's hands were guided by God, of that we have no doubt. He has the skills and courage to operate on an area of the brain that very few surgeons will touch. Now that so much of the tumor has been removed, she has a much increased chance of surviving!!! PRAISE THE LORD!!!

I'm watching Sahara sleep; I've always loved doing that. She just giggled...I wonder what the heck she is dreaming about! I hope it's about having fun with her friends, going back to school, so many things that she has missed for so long. She knows that they are waiting for her, and I think that will be the biggest motivation of all. :)

Thank you again for praying us through...we ask that you keep it going...

With love and SO much hope,