Sunday, July 30, 2006

Who's got the ball now, doctor?

Missouri may have good barbecue, but it doesn't have everything. And while those doctors in St. Louis may be smart, they may not know it all, either. While they may have done a fine job of checking out this thing in Sahara's head, and their laboratory technicians may have peered into their microscopes and identified the foolish tumor, they are not psychics or graduates of the Official College of Divine Intervention.

In other words, what do they know? They don't know Sahara, they don't know her parents, they don't know the spirit that surrounds this girl. They know the tumor. Well, so what? Someone needs to remind them: this is the story of the girl who kicks the tumor's ass.

Matter of fact, she's gonna stomp on it and kick it. And then Amy and Shannon are gonna drive over it with a bus. A bus filled with screaming Titans fans who know something about REAL barbecue.

The ball is back in the Aldridge court.

The latest from Amy:

We have put on our battle armor and are preparing to fight for her life.

We are supposed to contact the docs in St. Louis tomorrow to make appointments for Friday. One to have her stitches removed, the other to receive the death sentence the radiation/oncology docs are going to give us.

But you know what? We are not accepting that.

I can't begin to explain all that has happened over the last three it divine intervention, call it madness of desperate parents, call it what you will...but by the end of tomorrow (Monday), we hope to have plans to either go to a) M.D. Anderson hospital in Houston, or b) St. Jude's Hospital in Memphis.

There are amazing things happening in Houston...hinging on a new drug called Delta 24. This drug has completely eradicated cancer in the brains of lab mice, and did not damage precious brain tissue. It's injected by catheter into the tumor, two weeks later, the tumor is removed, cancer free.

We are going to try to get her into one of the human trials that are starting this summer - there's no time to waste.We asked the doc in St. Louis to send the vital info to St. Jude's, to get a referral in place there. He is supposed to do that tomorrow morning.

Going to St. Louis on Friday is not what we feel we should do. If she begins chemo treatments, she will not be allowed to enter any cutting edge trials. And they already know it won't save her, because of the location of the tumor in the brain stem.

We've never been the kind of family to just sit back and be told "no." We are not going to start now. As Sahara's parents, we refuse to submit to the status quo - they have given us no hope whatsoever in St. Louis.

There has to be something better out there...we don't care if we have to go overseas to get it...but we are going to search. There just isn't much time.

Sahara's spirits are good, and she's so glad to be back at home. Seeing her cats and dog again lifted her up so much. People are calling, praying, bringing gifts and is truly unbelievable to see the outpouring of love and concern, even from people we barely know. We are truly blessed with a big circle of friends and family, for which we are eternally grateful.

I'm at work tonight, sorting through my desk and trying to maintain a connection with my job. I love my coworkers (who have been so very kind and supportive), and my workplace is very good about helping people in tough circumstances. I hate leaving them all in such a lurch, but they understand and have been outstanding.

Next time I write I hope to have news of a trip to a place that can offer even a glimmer of hope, because the light has been doused in St. Louis.

Let it shine, Sahara. You've got the ball. Slam DUNK.

Friday, July 28, 2006

Pray harder.

The results are in, and they're not what any of us were hoping for. Sahara has a malignant stage 4 glioblastoma.

Amy and Shannon are devastated, exhausted, and at the moment, quite understandably, unable to think.

The rest of us may well be wrecked by this news, but we have connections all over the world. In between talking to God, let's talk to our families, our friends, our neighbors, people who know someone. Somewhere out there, there are physicians and surgeons whose hands were meant to cure this. There are researchers who are part of a miracle. Perhaps Sahara is already in the right hands--let's pray for that--but if someone or something else will find the light, lead the way.

You can learn more about glioblastoma at the following site.

Help me if you can I'm feeling down

Attention creepy thing in Sahara's head:

You've made your point. Now go away. Shrivel up, pack your duffel bag, and sneak away in the middle of the night. No one will try to stop you. Keep going until you find a creepy guy with a beard named Osama. He'll provide just what you need.

Thank you.

In other news, Amy sent this update today. Naturally, she's frustrated. Anxious. As we all are. As for me, I can't imagine having to eat those godawful powdered hospital eggs. Send those to Osama, too.

Tired, worried, tired, worried. It doesn't change.
No results yet. There should be a law passed that results must be returned within 24 hours.

It's torture. (FYI, biopsy results can sometimes take 10 days.)

Sahara woke up in such good spirits this morning. She was actually hungry, and ate a blueberry muffin. She did ask me if it was "real," because the yucky scrambled eggs they offered yesterday were NOT. Iwouldn't have eaten them either. Blech.

She sat up all by herself, her speech has improved, and she can turn her head from side to side. She's recovering, at least from this part.

She keeps saying that she's going to be FINE. I believe her. Last night she flipped Shannon off...that has to be a good sign. :)

I love this kid so much ... please keep the legions of faithful praying long and hard. I want to see her make her awesome three-point shots again.

Thursday, July 27, 2006

Who let the dogs out?

Amy reports in:

Long day today ... she's been getting sick from all of the meds.

Had some visitors from home, including her middle school principal Frank Ellis (whom she adores), his lovely wife, and Madison, one of her best friends,and her family, who are just the greatest, most supportive people.

S slept a lot while they were here, but sure did light up when she saw them.

We also had a visit from a fabulous lady named June, who brought her Dalmation named Nelly...she's a therapy dog. S just loved petting this calm, sweet, beautiful creature. What a joy this lady provides to the sick kids at this hospital. Says she's done it for 11 years. Yet another angel on earth that we have met this week.

Dr. Park is in surgery late this evening, so we are still waiting for him to come by and check her out. I was really hoping to have test results today...but I continue to wait. Got to run...back to the 12th floor.

Who was it that said it, or sang it: the waiting is the hardest part.

Wednesday, July 26, 2006

Notes from Amy, Sahara's mom

In between staring at her daughter and wishing hospital chairs were just a bit more comfortable, Sahara's mom sent an update:

She has done very well since the surgery, which lasted about 4 hours.

Unfortunately, the biopsy they did last night came back inconclusive. They've sent off a sample for further testing, and cannot tell us when we'll get the results.

Waiting is the worst. I stayed beside her all night, trying to catch a few zzz's , which was pointless. Slept a couple of hours this afternoon.

She has passed every test they've given her, so I'm praying that the biggest test of all will be passed with flying colors as well. She has been fully oriented (even knew what day it was).

She's strong. She ate some orange sherbet a few minutes ago.

Her neck hurts (a 5 inch incision) but she is dealing so well. Takes pills every hour and never complains. I don't know how she does it. Even told them earlier she didn't want the morphine for awhile.

Keep praying.

You heard the lady. As for Amy and Shannon, they're staying at a hotel near the hospital. If you'd like to leave them a message, or share something with Sahara, comments are on.

Tuesday, July 25, 2006

Birthday girl

Sahara celebrated her birthday yesterday with cheesecake, balloons, and flowers. Not a bad rebound for a girl who spent the earlier part of her day meeting with doctors and trying to keep her parents amused.

Parents. Please. The doctor tells you you've got a brainstem tumor and all they do is freak.

Sahara has no intention of letting this thing win. She's got far too much living to do.

This afternoon, the docs in St. Louis were taking the plunge--diving into her brain to figure out just what stupid sort of tumor decided it was welcome to take up residence inside her head. She'll likely stay in the hospital overnight, and biopsy results can sometimes take a few days.

So sit tight, be patient, say a prayer, and do something nice for a sick kid today. In the midst of all that parental weeping, Sahara ordered her dad to buy crayons and notebooks (with her birthday money) so she could give something to the sick kids.

She rocks.