I vant to suck your blood

Well, we've made it through another long day. Not a bad one, mind you, just long.

Got to the hospital early this morning for blood work and a visit with Dr. Wolff. It was apparently a rough morning at the doc's office for a lot of children today. It is so heartbreaking to see these scared kids and their equally terrified parents holding on to them for dear life as they get blood drawn, their temperature and blood pressure taken, and so forth.

Sahara and a few others who are used to the drills don't even flinch, and quietly watched the ones who were coming unglued. It's like an unspoken code between the "experienced" ones. They know the fear, some just handle it better than others.

Sahara is not bothered at all by any of the procedures. She gives blood to the smiling vampires and never complains. It is a screenplay of tragedy, and the nurses are the stage coordinators who keep things moving, despite the wails and the tears of the frightened ones.

But once the crying ends, the kids move out of the treatment rooms and back into the safety of the cheery waiting room, back to the play area, back to the books and magazines and toys. There are enough distractions to get the kids' minds off of what just took place, and the parents are given respite to regain their composure once again.

Had to wait for a room to open up on the floor, but we were placed in one right at noon. Sahara had lunch and took a short nap, then at 3:30 it was off to radiation for her first treatment. I think the staff was really surprised that she didn't require sedation to have the treatment. They asked us several times over the course of the day, "Are you SURE she doesn't need the sedation???"

Sedation, schlemation. She handled it like a pro. She has this mask that must be worn while she's getting radiation...it's plastic mesh that was custom-fit to her face on Monday. Once it's on and snapped into place on the table, there's no moving. She didn't bat an eye when they put it on. Gave us the thumbs-up sign and we knew all was well. The mask is rather eerie...looks like something from "The Matrix."

The treatment, plus a few x-rays, lasted a total of about 25 minutes. Not bad at all. She was smiling when we went to get her and take her back to the room. She's been hanging out and watching the Disney channel ever since!

Chemo isn't going to begin until 11 pm this evening. We thought it was going to take place before radiation. I guess that's what happens when we think too much and try to actually fool ourselves into believing we know what is going on.

The one constant thing around here is change. Sometimes it works in your favor and you get an early appointment instead of a late one. Sometimes you get lucky and your appointments run concurrently, rather than one in the early morning and another in the late afternoon. Sometimes you get an unexpected day off! And then, there are the days when you think (there we go, THINKING again) you have NO appointments and you end up spending seven hours at the hospital.

I'm excited to announce that I will get to come home for a few days in September!!! Our dear friends inTennessee, Jim and Linda Glover, generously donated enough Northwest Airlines miles to give me a roundtrip. I am looking so forward to getting back to work for a while, seeing some of our wonderful friends and family, going to El Torero for lunch and eating entirely too much, watching SoapNet at night and napping on the couch with my cats!!! Wooo hoooo!!!

It is going to be very, VERY hard to leave Sahara, though. We have been together non-stop since all of this started. But Shannon will be here and I know he'll be Super Dad as always. :)

A note to the folks in Cape and all parts near and far...the incredible Bill & Angie Tegel and Alison Morningstar are organizing a big benefit and silent auction to be held on October 14 in Cape...more details to come!!!

Rumor has it that a certain special girl is going to try really hard to make an appearance... hmmmmm... :)

Have a good night, everyone.

Love to you all,
Amy

You glow, girl

Yes, I am a night owl. And yes, I sometimes post at hours that are insane. I never, ever blog from work (I learned from Dooce.com and Petite Anglaise, thank you) so I squeeze in the updates whenever I can. I post on Eastern time, but the blog is set for Central Time, so it's not quite as bad as it looks.

Today a new phase of treatment begins and it's probably going to be a rough ride. If you pray, now's the time. If you believe in positive energy, then wrap your arms around Sahara and hold her close to your hearts.

Well, today was our last "free day" for a while. Sahara felt good, but was kinda tired, so we hung out at the RMDH for most of the day. She went to school for a couple of hours, rested a lot, and ate well. This evening we went to IHOP for dinner (Shannon was craving a big ol' omelet). She declined the menu and opted to go back to Sonic for another corn dog. LOL. Each one of us has such different tastes!

She crashed out early tonight, which is great. We have to be at the hospital at 8:15 in the morning to get checked in. This time she'll be getting chemo and radiation simultaneously, so it will be yet another new treatment adventure. We're hoping that it will go smoothly. The worst part, I think, is that she'll be stuck in the hospital for five days this time. Yuck!

Today I want to send out a huge THANK YOU to our friends at Stop & Shop Supermarket in Mounds, IL. Jeff Berryhill, owner, along with Bobby Pace and Stephanie Dixon, organized a raffle at the store which raised over $2300. They, along with many others in our little hometown, worked very hard to do this for Sahara and we are truly humbled and grateful for their efforts. We are so proud to have been raised in that small town with the best friends in the whole wide world. We love you all, and we give you our deepest appreciation! (Go see Bobby in the meat department for the most amazing Black Canyon Angus Beef...his steaks are out of this world!)

Sahara continues to get the most amazing, creative things in the mail!!! The personalized piggy bank she got today is SOOOO cool!!! So many great things, I could never, ever list them all. We are so thankful for each and every item! The thoughtfulness in each card and gift is so tangible.

Thanks to all of you, Sahara has fun things to do on days that are sometimes incredibly boring. She's really getting into the scrapbooking thing, too! Today at the RMDH a scrapbooking store held a workshop for the kids. Guess who had a BLAST doing it?

Please pray for strength for Sahara as she enters this new phase of treatment. We need all of the prayers we can get. And we know that God hears every one of them.

Love to you all,

Amy

Vitamin Zzzzzzzzzzzzzzzzzz

Just got back from dropping off my dear friend Packy (Sue Packard) at the airport. We had such a GREAT day today! Packy flew all the way from Vegas for a one-day visit, just to see Sahara. She is such a dear friend and it was sooooo good to see her.

Sahara felt so good today; it was the perfect day for a visitor! We went out to lunch and had Chinese, then out for dinner a while ago for steak. We're trying to load Sahara up with calories before the next hospital stay, which begins on Thursday!

Had a wonderful afternoon of good conversation and a lot of laughs. Sahara stayed awake all day long, because she didn't want to miss a single minute with her. She's sleeping soundly now!

Couldn't have asked for a better day. I just wish Packy could have stayed longer. (Thanks so much for coming to see us!!! We love you!!!)

Tomorrow is our last "free" day before Sahara goes back in the hospital bright and early Thursday morning, to begin the simultaneous chemo and radiation treatments. She has to go to school for part of the day at least, but I'm sure we will work in something fun before the day is over.

Stephanie W - not only was the cookie bouquet beautiful, it was DELICIOUS!!!!!!!! THANK YOU!!!!!

I think I'm going to turn in early tonight. No laundry to do, no paperwork to fill out... maybe I can get some extra zzzzzzz's!

With much love,
Amy

#3 for Mrs. B!

A wicked sense of humor? Moi?

Alas, it is not a Prada purse, real or fake. Although we did see more than one street purse vendor on the city streets Saturday. They spread their wares across a big sheet, and when the cops come, they take off running, often dropping purses along the way.

In addition to purse vendors, we saw jewelry, luggage, ties, and underpants. I don't know about you, but I don't fancy panties from the street.

Now, would you like to guess again? Shall I give you a hint? It's black and blue, but it isn't a bruise. And here's another: the farmer had one.

And now I am off to Dreamland, to chuckle merrily, think healthy thoughts, and rest my weary fingers which have written all day. Good night!

Just another manic Monday

The pigs are still safe, for now. Amy has brilliantly dubbed me the Princess of Pork! Right now the only pig I want is a chocolate pig.

This morning we thought we had but one appointment, but quickly found out that we were WRONG! Went to radiology to get her fitted for her radiation mask and to go through a simulation. Signed in at the desk, only to be handed a new schedule by a grinning receptionist who said, "you all are going to have a very busy day!" Sure enough, we did.

Did the simulation, ran across the building (no small task) to get blood drawn, ran back across to Audiology, got another hearing analysis. Good news! Her hearing has improved since we got here - and there is NO damage to her hearing from the chemo! YAYYYY! Such good news.

Back across to see Dr. Wolff, who showed us the MRI from last Friday. The tumor is still there (darn) but it has NOT grown, thank God! He says that the methotrexate is now inside the tumor and she is ready for radiation. We must admit her to the hospital again on Thursday for the next round of chemo (called the PEV cycle,which is 15 minutes daily), and radiation treatments will begin on Thursday as well (also 10-15 minutes daily).

She'll be in the hospital for five days. :( But we are free for the next two days and plan to enjoy the heck out of them! She's eating really well, which is great, because she's lost a couple of pounds since last week. We're going to try to fatten her up by Thursday. LOL.

We are so glad for the good news today, but we must take it cautiously. Radiation and chemo simultaneously can cause some really crappy side effects. We are hoping for the best. She's just going to be really tired for the next few weeks.

Sahara wants everyone to know how much she loves and misses you all. She can't wait to get back home - it's all she thinks about. This stupid cancer is seriously interrupting her social life and she's sick of it. :) It's great having Shannon here to chauffeur us around the area!

I'm seriously thinking of driving my car back after I go home for a few days in September. I really miss having my wheels. Just goes to show (another of a million examples) how spoiled we all are in our normal daily lives. We want to go, we jump in the car! Not so when you're living communally and depending on scheduled van service that only goes to the hospital or the grocery store. But we are so grateful to have it!

Good night and we love you guys!!

Stormy weather

Playing catch up--this is from Sunday night!

I made steak, mashed potatoes, fresh carrots and biscuits for dinner. Sahara stuffed herself, I'm proud to say! A home-cooked meal, a LONG way from home. We all had a nice time at dinner.

Tomorrow morning at 8:15, we go in to have her radiation mask fitted. Apparently, it's like getting a facial, only the end result is a reusable mask that she will put over her face each time she receives radiation treatments.

After that, looks like we have the rest of the day free. Hope so, anyway!

I am going to have a burning when all of this is over. I am going to set fire to all of the clothing that I've worn over and over and over since we've been here. I didn't bring that much with me, because I knew that space would be limited, I wouldn't need anything fancy, etc., etc. But I'm truly sick of all of it and can't wait to change it all out when I go home for a week in September. (If all goes as planned, that is.)

I'm keeping my eye on Tropical Storm/Hurricane Ernesto (whatever it is at the moment). Hoping that it stays far, far away from Houston, while at the same time praying that it leaves all of my friends in Florida alone. Very scary. I've seen how this area floods with just a simple downpour - I'd hate to see a big one hit this area.

Too much of a good thing

Well, we discovered something tonight: there is such a thing as too much barbecue. Pigs of the world, you're safe. For now.

A short update from Amy tonight:

We went to lunch today! We drove around for a while, and spotted a Fox Sports Grill. Sahara said that's where she wanted to go, so we did. Nice place...kinda like a Vegas-style bar. Lots of cushy couches, waterfall windows, etc.

The food was okay. She ate a burger and a couple of fries, and we were so glad. We've discovered that she can handle one activity per day, so we drove back to the RMDH right after we ate. Gotta try to make her rest. That's NOT easy when she's feeling spunky.

Shannon's here until next Saturday. It's good to have him here. They are so much alike, it's scary.

The birds and the bees

I have survived the city, despite my husband's driving. He may be a native New Yorker, but plop him in Manhattan and he's a big "ooh, look at that!" which is not helpful when driving. We got honked at more than anyone can imagine. But, we lived. We toasted Sahara with Bellinis in a lovely cafe and later on, when headed downtown, drove past a restaurant called Sahara Grill, and vowed to take her there when she gets better... to get food poisoning so bad she might wish for the days of chemo! Sometimes you can just tell that a place has that certain, uh, funk.

Well, whatever. Sahara, when you're up to it, come to New York and we'll take you wherever you want to go. But a word of warning: no SuperTarget. We have OrdinaryTarget--but I'm sure you'll find plenty of places to shop.

We picked up Sahara's surprise, too. Any guesses?

It's been such a nice day! Cloudy, even, so we didn't blister in the Houston sun while we were out. We made it to Super Target and Sahara had a blast giving Shannon the grand tour.

Fortunately, we don't need the wheelchair anymore - yayyyy! I think for the first time in his life, he enjoyed a store. LOL. He is NOT a shopper...hates it and avoids it whenever possible,but he had a good time. Sahara should be the new Target spokesmodel. (btw...there are 32 checkout lanes, ladies.) We picked up a few essentials, a couple of shirts for Sahara, and sour gummy Lifesavers.

Her appetite has returned! She surprised us when we got back in the car by asking for lunch at Sonic. I thought her mouth would feel better by the weekend, and I'm glad to say I was right. She had a corn dog, tater tots and a watermelon slush - wooo hoooooo! She just finished a soft taco for dinner, too. PROGRESS!!! I love it!!!

To Pam R...may God bless you in every way, every day. Thank you from the bottom of our hearts. I am speechless.

Kathleen M. - thank you SO much! Sahara started singing "O Canada" when she opened the box!!! (She learned that at hockey games in Nashville and St. Louis...LOL!) What an amazing gift!!! She LOVES everything!!!

To the Bernets and the Kyles - you ROCK!!!

Jill B. - only YOU could think of such a cool photo opportunity!!!! THANK YOU!!!

Sahara has had so much fun with all of the photos you guys are sending of Rick, yourselves, your pets...thank you to everyone who has taken the time to send them! They are precious and wonderful gifts.

She's going to start scrapbooking, I think - the cool stickers and stuff along with the photos have really inspired her. :) Every gift and card she receives is a bright light in her day. I wish I had the time to individually thank and hug each one of you who has sent something out to Sahara.

Rest assured, she is SO grateful for everything, and I am continually brought to tears by your generosity. And I know that God smiles on each one of you for taking the time to do these things. You are all so very special and appreciated.

It is so great to see how happy Sahara is to have her dad around. They torment me and drive me absolutely nuts when they are together, but it is just the BEST.

I forgot to mention it last night, but Shannon drove through an enormous swarm of bees on the interstate somewhere in Texas yesterday. Totally freaked him out. First the bird, now the bees...I really think they're out to get him. Perhaps I should report these incidents to Tim Badore, a comedian who does a bit called, "When Animals Attack."

If any of you listen to the Bob and Tom morning radio show, you've probably heard Tim, and he is hilarious. :)

Time to surrender the computer to the next user. Blessings to everyone and have a great night!Love,
Amy

That's what friends are for

Attention Houston Shoppers:

Get out of their way. They're loud, they're proud, and they're headed for SuperTarget. And they've got wheels. Here's my vision: Sahara will be driving. Shannon will be asleep in the backseat. And Amy? Well, she'll be flossing.

Hard to believe, but there will come a point when flossing will become one of life's great pleasures. Trust me on this. I only wish they'd invented Glide 30 years ago.

I'll be flossing diligently tomorrow, as we are headed into the city (that's Manhattan for those of you outside the five boroughs). We're picking up a treat for Sahara, and then we'll have brunch on the upper west side. If we are still functional, we'll head downtown to get a little carrot cake. That's one of New York's best secrets: the carrot cake is even BETTER than the cheesecake.

I just hope it doesn't rain. Today we actually had tornado warnings in the city, can you imagine? At 10:30 this morning, it was pitch black, darker than late night. The cityfolk were terrified.

What scares you?

The Friday Night Sahara Extravaganza Report

Today has been a good day. She had an MRI this morning, then we came back to the RMDH for lunch. She's able to eat better today, without so much pain.

We went to the grocery store this afternoon, and she went to the adjacent Petsmart with another family and their little boy, Aaron. He is SUCH a cutie. He had a liver transplant - but he looks healthy as a horse. He has such a great personality, and he and S have really hit it off. He's 5 years old, he sticks to her like glue, and she thinks he's really funny. :)

S is starting to talk more with the other kids, which I'm so glad about. There's a beautiful girl named Stephanie from Puerto Rico who is 15, and also has cancer. I think it is bone cancer in her legs. She is so sweet and quiet, and has the most beautiful, sad, brown eyes. She speaks some English, but her mom and grandma don't speak much at all. We're trying to learn from each other! She and S are starting to hang out a little bit, and I'm soooooo glad. Stephanie is a tiny little thing; she doesn't have much of an appetite and actually has a feeding tube in her stomach. But once I looked across the great room and they were sitting together munching on potato chips. YEAH!!!!

Shannon got here right on time at 7 pm. Sahara was bouncing off the walls! They had a good time catching up and are really enjoying each other.

Unfortunately, she got sick a few minutes ago, so that kinda put a damper on the fun. :( She hasn't had a nap all day long and has really worn herself out...so that's probably part of it. Poor kid.

She LOVED the blanket from her wonderful girlfriends in Cape...thanks so much, you guys. You ROCK!!!!! I love you all. :)

Gotta run...Shannon's beat and she isn't feeling well. Hope for a good Saturday!!

Love,
Amy

All you need is love

I've got to jump in the shower and get to the office, so let's get right to Amy:

Overall a good day. Sahara's doctor's appointment this afternoon was very positive, with her smile allllllmost back to normal, and her walking continues to improve as well. YEAH!!

Appointments tend to takeup most of the morning/evening, so she was very tired when we got back at 3 pm. She ate a light supper, then crashed, and is still sleeping soundly at 11 pm. This is a good thing and a bad thing; last night she did basically the same thing, and I ended up making soup in the kitchen at 3 am when she woke up starving! I'm ready for her this time, though...I have soup in individual containers in the fridge, so all I have to do is nuke 'em if she is hungry during the wee hours.

Shannon's running around like crazy, getting things together for his trip down tomorrow. He's found nearly everything I asked him to bring for us. Sahara just can't hardly wait to see him. Maybe she will feel like getting out for a while this weekend. It would be nice to see more of the city than the routine of the mile-long stretch between the RMDH and MD Anderson!

We had so many boxes come in the mail today that I had to haul a huge load to the dumpster!!! What amazing things continue to arrive!!! A personalized basketball (thanks so much, you guys!!), a great photo of her cousins holding signs that say "WE LOVE SAHARA!", warm fuzzy blankets, more fun crafty stuff...it is so much fun to watch her face when we open the packages.

She is so in awe of the fact that all of these things are for her, "just because." It is such a testimony to the fact that this girl is so very LOVED. Thank you ALL!

A special thank you today to Mr. Caleb Jones. Caleb, you saved me a trip to the grocery store on a day when I really didn't have the time to go! Your care package contained some dental floss - and I had just run out!!! You are soooo smart to have sent those things. Thank you so much, sweetie!!!!

Gotta run, there are others still waiting to get online. Much love to you all!

Why do birds suddenly appear?

A new day, a new look. It's not quite there yet, and for the moment, I can't alter certain aspects of the site, like colors and that weird background blob near the top.

It's making me cranky, so I'm going to take some vitamin CH (chocolate!) and go to bed. Thanks for your patience--pamela

Today was much better. The mouth sores continue to be a major literal pain, even though I'm alternating two different types of prescription mouthwash. One has benadryl in it, so I am using that during evenings and nights.

She's sleeping now, after going all day without a nap. School was much better for her today, thank goodness. I didn't want to fight that war, because she HAS to attend classes. Today she said that her teachers are nice, and since there was no homework, all is right in the educational world of the RMDH. LOL.

All she will eat is chicken or beef broth with seashell pasta and lots of butter, with hot chocolate to drink. As long as she is eating something, I guess it really doesn't matter what it is. I hope by the weekend she's able to eat food with more "ooomph" to it.

Tomorrow, there will be classes for her in the morning, then labs and a visit to Dr. Wolff in the afternoon. I wouldn't be surprised if some physical therapy gets worked in later in the day as well.

Hey, a bird flew into Shannon's head when he was working in the yard yesterday. What the heck does that mean??? Anyone want to venture a theory??? Maybe it was just attracted to the shiny surface...LOL. I really hope it means, "man who gets hit in head by wayward bird wins lottery."

And as always, my daily thank-yous to EVERYONE...the local mailman here is probably wondering why his load is so much heavier these days!!!

Shannon's driving down on Friday...12 hours. Yikes. That means only one thing to Sahara and me - SUPER TARGET ON SATURDAY! WOOO HOOOOOOOO!!! (Oh yeah, and we can't wait to see him, either! LOL.)

Tons of love to everybody,
Amy

Stand up and cheer

I remember my first days at junior high all too well. Of course, that was back when donkeys pulled us to school in little carts and we had to run home after school to milk the cows, churn the butter, and plant the crops.

Until I found my niche, it was the most awful place in the world. I walked around reciting my schedule (reading English math science social studies) every morning and I couldn't wait for the afternoon: blue band jazz band chorus art drafting. My math teacher was named Mr. Butz. He despised us all. Why else would he turn math into something so hard?

I yearned for something special that year, and it wasn't until I tumbled into the hands of a band teacher who cared about more than hitting the right notes that I found it. As I mastered scales, I mastered hallways, locker combinations, and my first attempts at love.

Sahara is missing out on all that, and she's feeling lost and left behind. Now, I wouldn't sic junior high on my worst enemy. But for today, I'm going to ask all of you a favor: if you are a classmate of Sahara, speak! Tell her a little story about life inside those junior high walls--a two minute snip of your day, no matter how mundane it seems. Maybe it's the lunch lady who's forever scratching her hairnet. Or a Mr. Butz of your own.

If you are not part of Sahara's personal world, take this one day off from posting so she can feel completely surrounded by her peers. Remember when you were 12 and went out with your friends in a pack? Friday night football, pizza? Your heart soared with exhilaration, and all was right with the world.

All you Cape 11, 12, and 13 year olds, step up! You're always welcome, but for the next 24 hours, it's your chance to shine.

Sahara feels a little bit better, although the mouth sores are a real problem. Got a new prescription today for a different mouthwash called Xyloxylin. Doesn't that sound yummy? It's the real name of something called "Magic Mouthwash," kindly recommended to us by a friend.

The other kind was Carafate, but Sahara's mouth is basically laughing at that stuff.

Another milestone...today she started classes at the RMDH. And for all of the teachers who are accustomed to seeing her bounding into the classroom smiling and ready for action, that is NOT how it went this time. She hates the idea. Loathes and despises it, too.

She misses her friends so much it is just awful. She's afraid of all she's missing back home, and that she will be left out when she gets back. It's just a really tough time for her emotionally.

So, to all of her amazingly cool friends, keep her in your thoughts! She did well in the classes though...two A's and a B on the papers she did today, and she also has homework(ARRRRGGHHH!) for tonight. Looks like that will be our evening activity.

The moody blues

Most Mondays I am cooped up in an office, writing about cars and the people who love them. Now, given my own genetic passion for shiny European coupes and the power of words, that is actually not a bad thing. But on a few precious Mondays each summer, I can take the day off.

Today was one of those special days and beyond this morning's update, I vowed to stay off the computer and actually do something fun. After folding a big stack of laundry (woo hoo!) I ventured out to the spa and had the royal treatment. Sometimes there is nothing more uplifting than red toenails.

And if that wasn't enough, my husband and I jumped in his convertible and drove down to the south shore, heading east on Ocean Parkway with the top down, a clear blue sky, and dunes and navy ocean on our right. Aside from the fact that my hair is still insane, it was wonderful. We hit some little shops, had incredible BBQ for lunch, listened to the blues, and came back the same way. Swam a little, then curled up for a nap with a pretty quilt. Ahhhh.

Every Monday should be so good. Sahara, tomorrow when you are feeling low, imagine yourself in the backseat. (You can omit the parts where I'm screaming Watch the road! Ach! Car! Oh! Don't drive off the bridge!) Take a deep breath, smell the ocean. Forget the tumor for a moment, forget that you miss home more than you ever thought possible. Just feel the wind on your cheeks, the sun on your face, and catch the music in the air.

Sahara's been really tired today, as well as sick several times. I expected it this time, though, and it was easier to deal with (at least for me).

She didn't eat very much, but hopefully she stored up some calories from the weekend. God bless the angels who have sent the wonderful artsy stuff...stickers, scrapbook stuff, stencils, stamps, markers, pens...they came in SO handy today.

She didn't feel like leaving the room, so we piled all of those things in the middle of the bed and were crafty today. Anyone who knows me knows that I am NOT good with arts and crafts...at one point Sahara said, "I really wish SHERYL was here." Yeah, yeah, yeah.

But the things we have make it so easy that even a nerd like me can make cool stuff. We made some cards, and we will get them mailed out tomorrow (hopefully!).

Sahara's highlight today (aside from the mail delivery!!!) was talking to Mrs. Hecht on the phone. We were up very early, and about 7:45 she told me she wanted to see if Mrs. Hecht could talk for a few minutes before school started. Thank goodness I still have the CMS phone number on speed dial!

I don't know who enjoyed that conversation more...I think they both had a great time chatting!!!

She had a moment of weakness this afternoon...I think she just felt so bad that she couldn't do anything but cry. I asked her what was wrong, and she just said,"everything." So we just snuggled up and took a nap. Sometimes that is a good answer, and often the only one I can offer.

Muchas gracias por todo

One of the coolest things in the world is going to another country and forcing yourself to speak the language. You may think you know nothing about Bulgarian or Urdu, but if you want to eat, wash your hands, or buy a pretty scarf, you'd better learn quickly. I'm always amazed at how quickly the words come--and how awful I can make them sound.

Just last year, I got lost in a small suburb outside Paris. My French was, and is, tres pathetic. I was due in a meeting, and there I was, wandering unfamiliar streets. Bonjour, I greeted all the nannies with their young charges, hoping one would immediately recognize my bad accent and offer to speak English, but non. Finally I happened upon some construction workers, and blurted out something along the lines of Bonjour, je suis un petit poulet, desole.

In English, that would be Hello, I'm a little chicken, forgive me.

But that was good enough. The Frenchmen took me by the hands, looked at the address on the card, and led me to the door. Merci, merci, I said. And they beamed.

Wherever I go, the ability to say hello, please, thank you, goodbye, and I'd like one of those please, not to mention chocolate, has opened doors, worked miracles, and made cold faces warm up. Learning more pays off in a big way--but those basics will carry you far.

Even in this country, where English is the unofficial official language, it can be an act of kindness and grace to welcome someone in words they understand, or to say thank you to someone who is still learning to navigate the English dictionary. It doesn't make us any less American--and in fact, it shows what is good about our country.

So for those of you who studied Spanish, whether you learned from Sesame Street or a classroom, or whether it was your mother's tongue or your boyfriend's, share a phrase or two with Amy and Sahara so they can do more than smile at the people who are helping to light their way in Houston.

We're back at the RMDH!

Sahara made it through round two with flying colors. She was released from the hospital this afternoon, and she's sleeping soundly now. If the pattern from last time holds true, she'll be exhausted for the next couple of days and won't feel like doing much of anything.

One of the evil mouth sores (like a fever blister on the inside) has reared its ugly head already, so it's becoming really hard for her to eat again. I'm glad she bulked up on burgers and fries the last couple of days. I made a total of four trips up the street to St. Luke's Hospital (home of the fabulous McDonald's).

No doctor's appointments booked until Thursday, according to the latest schedule we were given today. The scheduling system is so cool...eliminates the need to write down appointments and other important information. I know she'll have some physical therapy coming up again soon, so that will be added at some point.

As soon as she's up to it, she will attend classes here at the RMDH.

Teachers, I need help! I need to know a really good book that will help me learn some useful Spanish in a hurry. Perhaps "Spanish for Dummies?" LOL. There are some exceptionally sweet people here that I communicate with mostly in smiles, but want to do more.

Right now, I can best describe my grasp of the language like this: "I learned all of the Spanish I know at El Torero." (Everyone in Cape knows what I mean...LOL!)

Sahara misses her friends terribly. Missing the start of school has been so hard on her. She can't wait to get home and see everyone again.Shannon went home yesterday, but will be coming back down on Friday. Thank you to all of our friends and neighbors who are taking care of him and making sure he eats! He hasn't done a lot of that in the last month. Keeping him busy is a very good thing.

I can't say it enough...THANK YOU to everyone who continues to send such creative, beautiful, THOUGHTFUL gifts and cards!!! We will need a suitcase to transport all of them home - and yes, we are keeping them ALL!

Special thanks to my wonderful coworkers at SEMO - you guys ROCK and you know who you are. I'm away from the print shop at the busiest time of year, and they are holding down the fort and keeping me from worrying about anything. I love and miss you guys. No one on the planet has better coworkers than I do.

(Nine hundred suckers...Charlie and Jane, you two are hilarious!!!!) Jan: thank you, thank you! She loves everything!!!

Well, time's up on the ol' RMDH computer. All is well here in Houston for now. Our love to everyone who takes the time to read the blog each day. Thank you for your continued posts, prayers and thoughts!!!

Love,
Amy

You deserve a break today

Okay, I have a question for all of you. If you go to McDonalds in the United States, do you expect a hamburger to be a hamburger--with the same toppings and the same itty bitty meat patty? Now, I'm not talking about you mates downunder with your thing for beets on burgers, or those of you in India who enjoy lamburgers because the cow is sacred in your culture.

Here in New York, the McDonalds hamburgers are missing something: mustard! Though I rarely dine with Ronald anymore, I can't tell you how comforting it is to visit an out-of-state Mickey D's and get the whole burger, just as Ray Kroc planned.

Sahara had some comfort food of her own today. While she's on chemo weekend, let's comfort her with a silly story or two. This picture makes me laugh every time I see it--I always want to tell those cops "No, no, not the CLOWN. You were supposed to bust the Hamburglar!"

This has been a day of sitting, waiting, watching and resting.

Sahara's second bag of chemo will be finished about 10 pm tonight, then we wait for two days for it to run through her system. With luck, her levels will be good enough Sunday evening for us to be able to go back to the RMDH.

She was sick once this morning, but has since started feeling better. We discovered a McDonald's across the street in St. Luke's Hospital, so she was excited to get a burger and fries a little while ago!

Neither of us could remember the last time we had such a simple thing as a McD's burger. Funny how something so common became such a treat today! We are so easily entertained!!!

We want to say a special thank you to Terry Young and Bobby "Hucks" Pace for driving Shannon back and forth to the St. Louis airport. And to Ginger - thanks so much for your rides in Houston!!! You are all so very much appreciated.The support we have from our family, friends and people we've never met continues to amaze and humble us. We love you all. In hopes of a peaceful night...

Swamp creatures

The day in two parts:

A fairly calm, although tedious day...waiting as patiently as we can as the process of getting admitted takes place. Still waiting for the chemo - and it's nearly 7 pm. All of her tests must be just right before they can hook her up, and there is one more we need to get back yet.

She's bored, eating a hot dog and watching the Disney channel. Thank goodness for Zack and Cody!!!

Another steamy hot day in Houston - it's so funny, because people here think it's so much colder inMissouri. HAH! We always laugh and tell them about the soupy conditions we endure in the summer months.

We'll be here over the weekend, as the chemo runs for 24 hours, then it takes 48 to get it out of her system. This time they are accessing the port in her chest, eliminating the need to stick needles in her arms. She's glad for that, but still nervous about the port. It's still very foreign - you can see it just below her skin, and I think it freaks her out a little. But to this day she still has not complained.

(She doesn't like to constantly be told, "EAT!" and"DRINK!" but she might as well get used to it.) She did manage to put on two more pounds this week, which helps. I had to buy her some smaller pants, because the ones she was wearing earlier in the summer now fall off of her!!!
I'm glad I still have some of the smaller ones at home, just in case.

I want everyone to know that we truly appreciate every card, letter and package...you are ALL so special and kind for taking time out of your day to send things to Sahara. I can't say thank you enough!!! We've received so many cool things to help pass the time, and it has helped out tremendously!

Better close for now and get back to her room. Love from all of us,
Amy, Shannon and Sahara

And, earlier in the day:

I was too worn out to even attempt an update last night!

Shannon finally got here about midnight; he got delayed in Dallas because of mechanical problems on the plane. Extra special thanks to Bruce Robert for his help - his frequent flyer miles allowed Shannon to come back to Houston for the next round of Sahara's chemo. THANK YOU SO MUCH!

Yesterday was good - more tests at the opthalmologist, which overall took about 3 1/2 hours...very intense stuff. The rest of the afternoon was filled with laundry, a bit of cooking, and packing for the hospital stay, which begins today.

We're waiting for a room on the 9th floor to open up now. We got here at 8 am, and it's 11:15...things don't always move quickly! As soon as she gets a room and gets settled in, they should start the methotrexate.

We're praying that she does as well this time as she did before.

Yet again, thanks to EVERYONE who is sending cards, letters and gifts to Sahara!!! The desk staff at the RMDH are amazed every day at the things she receives. She gets the coolest stuff...I'm so jealous. LOL! She is so excited every day, waiting for the mail delivery.

What are you waiting for? Pick up a pen. Write Sahara a letter, a story, a poem. Send her a photo (but no nekkid people, please). Draw a picture. Today's theme: BELIEVE.

Pretty in pink

The world may have its troubles, but Sahara and I have another cool thing in common: fuchsia clogs! There are those who think they're sinful. Others worship their Crocs and insist on wearing them everywhere. They've inspired articles in all sorts of major newspapers, and there are websites devoted to clog love (and clog hate).

Well, in the words of teenage girls everywhere, WHATever. We may look like we're wearing pink clown shoes, but our feet feel good. Amy isn't so sure.

I might have to break down and get myself a pair. :) I've hated them forever, but they look so cute on Sahara. I'm sure I'll look like a big dork, but hey, it wouldn't be the first time.

This morning we had our first appointment with the very handsome and extremely cool Dr. Weinberg, a neurosurgeon. (It's a small world...he knows a neurosurgeon from Cape Girardeau, Dr. Gibbs. He said he'd be glad to work with him if the need should arise once we finally get back home.)

He saw Sahara just to make sure he's completely up to speed on her condition, and to make contact with me should anything happen requiring his expertise. I really like the way they do things here - everyone is basically a part of a massive treatment team, keeping each other informed of what is going on daily.

Right now she's just started two hours of cognitive testing. She didn't feel very good when the day started, but she thinks she's up to it.

At noon we'll break for lunch, then it's off to physical therapy for their initial assessment this afternoon. Another very full day.

I'm in the Cyber Center at the hospital while she's doing the testing. They have computers, printers, copiers; it's great. Nice to be able to get out of the waiting room, too.

Plus, an added treat...the gentleman volunteer running the room today brought in a cd of swing music, which I love. So I'm enjoying that as I type. :) Have a fab day!

Potty breaks

Just in case you're interested, we've posted an address for a special bank account that's been set up to help cover Sahara's expenses while she's in Houston for treatment. If you look on the right sidebar of the blog, below the photo, profile, links, archives, and Blogger logo, you'll see two addresses. One is for cards and letters--the other is for contributions.

Of course, there are many ways to give--those of you who send little stories, jokes, and cheery thoughts or prayers are giving so generously from your hearts. Do what feels right for you.

Yesterday was a fabulous day! The only drag was that my sister had to fly back home, and we all cried. That was no fun. But after she left, we decided to take a cab to the magical land of SuperTarget! We bought groceries and other necessities, and Sahara bought some fun games.

If you haven't played Cadoo with your kids, go out and buy that game immediately. It's a scream. I swear, you could live in that store and never leave.

We got one of the electric wheelchairs forSahara...let's just say THAT was an adventure within itself. It gave me a whole new perspective on life as a physically challenged individual. Personal opinion here...every single one of us is probably guilty of getting annoyed at someone in a wheelchair now and then...they are slow, the chairs get in the way, etc...but if you ever are in the position of having to use one of them, you will see the other side of the coin.

It's tough! You are often made to feel as if you are a major inconvenience to someone's day. People jump to get in front of you, endangering themselves in the process. We didn't enjoy the attitude we were given by several shoppers. Gee, SORRY we have to use this wheelchair and ruin your otherwise perfect shopping experience!

I'll step off of the soapbox now...but please, to everyone reading, next time you encounter a person in a wheelchair, don't huff and puff if they happen to slow you down a bit. See if you could perhaps help them retrieve something on a high shelf that they can't possibly reach...or better yet...smile and say hello. Someday the person in that wheelchair could be you or one of your loved ones!

And if you don't need the handicapped restroom, please don't use it if another stall is available! When you have a child in a wheelchair who is about to be sick, it's nice to be able to quickly get into the accessible stall and help her.

Today was good as well. Doctor's appointments went well. Her blood counts looked good, and we will definitely be proceeding with the next round of methotrexate chemo on Thursday. She will be admitted at 9 am.

She was bummed out this afternoon, thinking of all of her friends starting school at CJHS today. I think that's one of the hardest things she's facing: missing her friends and school. She can't wait until we eventually get home so she can get back to her"somewhat" normal life.

Keep her in your thoughts, friends and teachers!!! Speaking of those wonderful friends and teachers, THANK YOU for the MOUNTAIN of cards, letters, gifts and all-around cool stuff she received today!!! The staff at the RMDH was stunned by the sheer volume of it all!!! We just can't thank everyone enough. The pajamas, cool toys, balloons, activities, snacks, gift cards, cash (she loved the cash...more for SuperTarget...LOL), it is so touching that I just sit and cry. We love each and every one of you, near and far, whether we know you personally or not, you are all precious, wonderful people and we are so grateful for the things you are doing.

Celebrate good times (come on)

Anyone hungry for a burger? Hot dog? Brownie bite? Because we have tons of them leftover! Come on over. We'll grill 'em up and cheer Sahara on.

The party was great, but work is looming just around the corner, so I'll keep this one short.

There have been so many miracles since this whole thing started--for those of you who have opened your hearts, thank you--from the family, and from me, because you amaze us all with your kindness and generosity. Thank you, everyone, for wrapping Sahara in a giant blanket of love.

This is Amy's Saturday report:

Another fine catered meal tonight...more barbecue! More brisket, along with smoked chicken, potato salad, a wonderful slaw that had apple slices and sesame seeds, and...peach cobbler for dessert. I'm gonna get fat on all of these regular meals.

Sahara did much better today. We had a good time. She felt like getting up and moving about, ate well, played cards and games, etc. It was a really pleasant afternoon and we all enjoyed it.

It was another Christmas-like day, too!!! Special thanks to the Krauss family, Jim and Linda Glover, the Todd family, the Senn family, Dr. Branson, our mystery writer from Lubbock (bless you), the incredible Packy, and everyone who is sending cards and letters! You ALL helped make this day a very good one indeed!!!

We love you guys so much. Hope you had a great day!

Blame it all on homework

Good morning, boys and girls. If you're wondering why Sahara got this stupid tumor, the answer is right here on the internet! And gosh, that must make it true. It's homework! So all you teachers, if you're reading, please dispense with homework. Forever. Thank you very much.

Okay, okay. Before you get your panties in a knot, homework is cool. (I have to say that; my husband is a teacher. My mother was a teacher. And I adored MOST of my teachers, except Mrs. T who once screamed at me for having my nose in a book, as if that was a BAD thing.)

The kindness and genuine concern of Sahara's teachers has been something completely marvelous to watch on this site. I suppose that's testament to the child involved, but in this age of teachers buried up to their eyeballs, it is a marvel to observe. God bless you all.

Well, I should either be making a vat of baked beans (but not for poor beanless Shannon) or setting up chairs, so I'll turn things over to Amy, who loves those teachers even more than I do. She'd like to get a few things off her chest:

1. Keep the comments positive. A 12 year old girl is here reading. Sheesh.
2. The facilities, the people, everything at St. Louis Children's Hospital, it was all fine...the staff was outstanding...we just didn't accept the doctor's way of dealing with her condition.
3. We were truly led to Houston, and I don't mind telling the world that.

Today, Sahara's second grade teacher, Carla Bittle, sent her a box with the cutest little thing inside...it's a cat from Perfect Petzz...it is a sleeping cat on its own sweet little bed...and it purrs when you pet it. SO SWEET!!!!

Her SECOND GRADE teacher...WOW!!! I swear, she's had the best teachers that any parent or student could ever ask for!!!

She's been feeling better today, although totally wiped out and tired. Her white blood cell count was lower yesterday, which explains the fatigue. Hopefully it will go up again soon. At least she's eating and keeping it down. RAH!

A player from her favorite WNBA team visited the House today - Mistie Williams from the Houston Comets. She read a book to the kids, gave out prizes, and was genuinely sweet to everyone. Sahara won a poster and a hat for answering two trivia questions...and I won a t-shirt for knowing the team's mascot, "Haley." Get it...Haley...Comets! LOL.

I wish I was coming to your party tomorrow. Sounds like a blast. Right now, it looks like we'll be resting for the weekend, as we have no appointments or plans of any kind. Monday, the grind returns with a 9 am doctor's appointment, followed by whatever else they think up for us to do.

Stupid cancer. Gotta go...more when I can. Have a great party and eat some extra watermelon for me. :)

I wish you were coming to the party, too. Think they'd let you fly up with some of that Texas brisket?

She shoots, she scores

It's Friday! Here is New York, we are celebrating both a glorious, non-humid day--and the fact that a certain Rick Springfield is in the hood. For all of you who've been nice enough to ask, I can't be there tomorrow--we're hosting a barbecue for 50 people. Rick, if you are reading and feel like a burger or some real NY cheesecake, you just tell Amy and she'll get you the secret directions. We're about 5 minutes from Westbury Music Fair.

Amy and Sahara have been up and down over the last day. Care to hear why?

Sahara was given tickets to a Houston Comets game, and believe it or not, she actually felt like going last night. (She was tired from another all-day marathon of tests, getting her eyes dilated at the opthalmologist, and another hour and a half long MRI.)

Anyway, we took a cab to the game - at least we THOUGHT that's where we were going. We were very specific: Toyota Center. Not knowing where the heck we were, we didn't pay much attention when the cab stopped, obviously signaling that we were "there." Imagine our surprise when we discovered that we were NOT at the Toyota Center; oh, no - we were at MinuteMaid Park, smack in the middle of the chaos preceding the Astros game.

So, here's my sister and me, pushing Sahara in a wheelchair in downtown Houston, trying to find the Toyota Center. We asked a couple of people, who attempted to give us directions, and between the two, we surmised that we were between 1/2 and 1 mile from the place. We walked and walked and sweated and walked, but finally made it, just in time for opening lineups.

Note to self: take map of Houston along on cab rides. It was the second time in one day that a cab driver took us to the wrong place. OY! Anyway, the game was fun while we lasted; we left at halftime because S was so wiped out.

She was happywith her souvenirs and pretzel with cheese sauce. :) The trip back to the House was better - we had a driver who knew where he was going. Hallelujah!

Today is a rest day. She's feeling better, although still tired. A while ago I ran up to the hospital to pick up a package that had been delivered forSahara...extra special thanks today to Amy and Brad Blackman ((((((you guysssss))))). The cheesecake practically glowed with light from heaven when we opened the box. :) You are so sweet!!!!! Sahara can't wait to dig into it after dinner this evening.

Baloney!

Don't worry, I'm not always Mrs. Crankypants. But shhh, don't tell my husband.

This is an update from yesterday. Now that Amy and Sahara are living with Ronald McDonald, their opportunities to email are limited, because they share the computer with 50 other families. But rest assured they are here, listening and loving all your love and wisdom.

I do know that Sahara had several doc appointments and an MRI scheduled for today--so the poor kid is probably whipped. Keep your fingers crossed.

After a wretched night and morning, she ate some lunch. I made her my almost-famous chicken noodle soup, and she also asked for some fried baloney.

(Now, I had nothing to do with that habit - it's Shannon's fault. We must look like real hicks, frying baloney in the community kitchen here. Hee.) But if she likes it, then more power to her. She ate really well and is now napping. Hopefully this will stay down.

Good news for meeeee - the Junior Women's Club of Houston catered lunch today - BARBECUE!!!!! WOOHOOOO! Melt-in-your-mouth brisket that was so good I nearly cried. Every day the food that is brought in just gets better and better. :)

If you can't say anything nice

Let's make this a quickie:

Freedom of speech is a wonderful thing, and we support it around here. For all of you who are writing, blogging, commenting, or posting about Sahara's story, we welcome your words, your efforts, and your good wishes.

Period.

Today I've had the sad task of reading a number of emails from people who have done just that, and now have others telling them that the Aldridge family or I am offended. Nothing could be further from the truth.

Get the story out there. But please, be accurate. If you didn't read it here first, or get it directly from Amy, Sahara, or Shannon, it may not be true. Some of the things I posted yesterday are out there, and people are passing them on. That helps no one. And it can hurt the Aldridge family. Mistakes about ages or birthdays are no big deal--but rumors about Sahara's health are more upsetting. Please, we will tell you all we know, and all the family feels comfortable sharing, here.

On a related note, there have been some ugly comments on this blog, and I've deleted them. If you don't like what we have to say, don't read, and don't post. But if you write something cruel or hateful, please don't expect any hospitality.

The truth, the whole truth, and nothin' but the truth

Recent posts and comments as well as an accidental Google search have led me to some conclusions:

1. Some of you are confused.
2. 99.9% of you mean well and are touching Amy and Sahara's hearts, as well as mine.
3. People get real angry about barbecue.
4. It's probably time for me to out myself.

Given that, I have a message from Amy: This website tells the official and correct story. Any other site, while well-intentioned, is not coming from Amy, Shannon, or Sahara, and may not be accurate.

People, you're free to write about Sahara and we love that you are getting the word out. But please, stick to the truth. Don't take rumors and run with them.

Now, for the facts:

1. Sahara is 12 years old.
2. Sahara is being treated at MD Anderson for a stage 4 malignant glioblastoma.
3. Sahara has not had a stroke, and she is not paralyzed.
4. Sahara and her family like St. Louis just fine. But they chose to seek treatment at a specialty cancer center rather than accept the grim prognosis of the Missouri doctors. (What parent wouldn't do the same?)
5. Sahara and her family like barbecue. And cookies. No matter where they're from.
6. Some people like pork barbecue. Some prefer beef barbecue. Others like chicken. I LOVE barbecued salmon. SMART PEOPLE like all of the above!
7. Amy and Sahara do not share a birthday. They do, however, share a wicked sense of humor, a heart, a passion for all things Rick, and a zest for life that goes over the moon and back.
8. If you are feeding Shannon, do not give him beans.
9. Yes, that was Sahara that Rick pulled up on stage.
10. Amy and Sahara have not run off to join the circus. Or the rodeo. Or the yodeling pack of velvet-Elvis painters who eat nothing but prunes.

Amy is the green voice on this blog. Sahara is the orange voice. And I write in black.

My name is pamela (not Pam) and I am Sahara's birthday twin. I am a writer from New York, born and raised in the midwest. Amy and I have known each other for about eight years; we have shared secrets, stories, sorrows, and the kind of laughter that either makes you a) snort or b) pee your pants. And sometimes, both.

I am the voice behind the blog because Amy has more than enough to deal with. I can't imagine being in her shoes and having to explain things 1,000 times a day, knowing that people genuinely care and only want the best for my child--and knowing that every time I talk about it, my heart breaks and I want to cry.

This blog was created to tell Sahara's story, with all its ups and downs, so that on the nights Amy's either too exhausted (or too full of good barbecue) to talk, those of you who love them will find updates and snippets of their day.

Amy wrote a long and lovely introduction to me a few days ago and it made me blush. She also commanded you to send me chocolate. (No wonder I love her.) Well, don't--I have more than enough, thanks.

She also suggested I post a link to my own site. Her words: If you think she's great on Sahara's site, she'll have you rolling in the floor if you read what she has to say on her own space.

My space, if you are so inclined, is www.scarletcommunications.com. I blog there at Fat Lady Sings, where I rarely sing; instead I whine, bitch, and rant, often in naughty words. So cover your eyes if that offends you.

And now back to Sahara, because she's the one who matters most.

Please Mr. Postman

They've escaped! Amy and Sahara have left the hospital with its 24-hour room service and needle-poking nurses of the night, and have officially moved into the Ronald McDonald House. It's just minutes from the hospital--and better yet, minutes from SuperTarget. Because when the Aldridge girls get away, there's always shopping.

Yesterday's surgery went well, and Amy's sister Sandy arrived in Houston this evening. Here are some highlights from Amy's Tuesday message--but before I go, please heed Amy's request and don't send food. Also, Ronald McDonald is allergic to cats, so don't send those either, no matter how much you think they'd cheer Sahara up. However, if either Rick Springfield or a cure can be stuffed into an envelope, mail away!

Today has been el sucko. She got sick this morning, has been woefully tired all day, and hasn't eaten much. This is the kind of day I've been dreading, and I know there will be a LOT more of them to come. Hoping for a better tomorrow.

I asked S about her favorite color for the wristbands and she said orange would be cool. She's really not particular about anything right now, though, so any color would just thrill her to pieces. I really love the idea of the wristbands. Sahara loves those things!

Sahara loves mail, and her address here is:

Ronald McDonald House Houston
1907 Holcolmbe Blvd.
Sahara Aldridge, Room 22
Houston, TX 77030

She received some cards today and lit up when she opened them. :)

No need to have food shipped in to me, although it's mighty sweet of all who have offered. We eat like royalty around here! Southwest Airlines catered a huge meal tonight and it was delicious.

Thanks to everyone who posts on the blog - we read them all and they mean so much!

Cookie Monster

I had a wonderful day with Sahara...as wonderful as one could hope for, considering the circumstances! She was bright-eyed and perky all day long. Full of sass and eating everything in sight. You'd never guess she has that evil thing in her head.

Shannon's been pretty miserable since he got home, but he seems to be doing better this evening. Our wonderful neighbors and church family are feeding and doting on him.

We've always been such an independent family...all of this is really hard to absorb. But it gets more real each day.

Rick's amazing fans are really gathering around us...I just finished reading some posts on the RickSpringfield Forever yahoo groups site, and I'm still crying over the things that these creative, wonderful folks are thinking up to raise money for our sweet girl. To each one of you, YOU ROCK. There are a lot of precious spirits out there in what we fondly call "The RickWorld."

It's kind of like a giant dysfunctional family...it's not without problems, but just WATCH them get together for one of their own. Their power is unstoppable! Thanks to you ALL!!!

We read the blog every time we get a chance, and Sahara just sits there wide-eyed at the fact that all of these people are reading about her and leaving encouraging messages. It means the world to us!

Gotta go - cookies and milk are here. A perfect way to end a quiet Sunday, even if it's in a hospital twelve hours away from home.

Chrome, smoke, and BBQ

It's Sunday morning and I know a lot of you will be speaking skyward about Sahara. Whether you're in a church, a temple, a mosque, a backyard pool, or a smoky joint that serves the best pulled pork on either side of the Mississippi, Sahara and her family are so grateful for your love and prayers. You may be a teacher, a friend, a Rickfan, a Parrothead, or someone who just heard.

Well, come on in. Join the shouting. You don't have to be religious here. Fix yourself a plate of something delicious, appreciate the bounty, and slip in a wish. Or two. That'll do.

On Amy's wishlist: a healthy child, a fluffy bed with soft pillows, and a plate of BBQ.

Turns out that the PICC line they put into Sahara's arm (instead of the central line we thought we were getting) will be removed on Monday morning...why?

You guessed it...in order to put in a central line. I looked the doc straight in the eye and asked if we could have a refund for the PICC line. Oh, well, humor is lost on the humorless. (In quiet defense of the hospital, they had seven surgeries lined up and couldn't get Sahara into the central line "schedule" - so to get the chemo started, they inserted a PICC line.

I'd slap somebody to get some barbecue right now. There's a really good smellin' restaurant in the cafeteria, and I might try one of their sandwiches...I have seen the pork - and it looks goooood.

So much going on. She finished the second bag of chemo at 4:30 am. Still doing very well, eating and drinking, and smiling, which is sooo important. Hasn't been sick at all! YEAHHHH!

Shannon's flying back to work this week. We're trying to figure out a schedule. Yesterday we found out we will likely be here for 13 weeks instead of 6. Sahara's best friend's mom's sister lives in Houston. She's giving Shannon a ride to the airport. There are truly angels all around us.

It's a challenge keeping up with everything. I think I slept maybe an hour and a half total last night. But who's counting. As long as she's hanging in there, I will too.

Come Saturday morning

Good morning Sahara fans. We may update a bit less often on weekends, but Amy had this to say yesterday:

It's great to live in a small town. When the chips are down, people line up to ask what they can do to help. We have the greatest teachers in the whole wide world - each one of them has been so involved since we found out about the tumor. They are lined up and waiting to help out once we manage to get back home. They are all precious to us.

Sahara started getting her first round of methotrexate Thursday night about 10 pm. So far, it's going very smoothly, with no side effects showing up as yet. Her only complaint was being awakened all night long to get checked by the nurses.

She's now in Audiology having hearing tests. They have to closely monitor her hearing, as well as vision, to see if the tumor is further affecting her.

The radiation oncology folks came by briefly earlier. We should get a plan soon that tells us which type of radiation she will be getting, and when. I hope they can use the new proton machine (look at mdanderson.orgfor info on this thing...wow). Right now it's only being used on men with prostate cancer, but we hope she can be one of the first kids to get the benefit of its treatment.

Speak to the sky

Cat's out of the bag, hmmm? Yes, Miss Sahara not only knows all the lyrics, but the child has the moves. Here for your viewing pleasure, today's photo is indeed Sahara with her greatest fan. Oh, the stories she could tell. For instance...who fed Sahara her first sushi?

Yes, that would be Rick.

The family's had a busy day today, so I'm going to give you the highlights:

Tests, tests and more tests...and she smiled through them all. I don't know how she does it.

She had a central line inserted into her right arm this afternoon, to accept the chemo treatments and prevent unnecessary poking and prodding down the line. She might be starting chemo as early as 9:30 tonight - this doc does NOT mess around.

She's been accepted into a study that begins by administering high doses of methotrexate (it kills folic acid, as I understand it...preventing cancer cells from spreading). It's going to be a long journey.

Sahara enjoys the fact that this hospital is the only one in the country that offers on-demand room service. No prefab food - it's cooked when you order it. Her first request was a cheese pizza, breadsticks, cantaloupe, chocolate chip cookies and a Sprite. :) Poor kid hadn't eaten in 24 hours and she was ravenous.

Thanks to each and every person who has posted a message of hope - we read them all and they are greatly appreciated. We can never have too many prayers!!!

Some comments on comments

Sahara and her family have been blown away by your comments--it's clear this family is loved.

But I'm going to make some suggestions, to keep things easier for everyone.

1. Please don't take advantage of this site to sell your products or push people to your site. That's cheesy and cold, and I'll delete your post the second I see it. Do it again and I will unleash my wrath.
2. Try not to leave personal phone numbers or addresses on the site. I know you mean well, but the sad truth is, there are opportunistic jerks who take advantage of such things. If you want Sahara or her family to get in touch with you, leave a comment without the specifics and we'll figure something out.
3. Please understand that the Aldridge family is being bombarded with information right now. If you leave a message or call and they don't respond, don't feel bad. They love and appreciate all the support, but their days are intense and full and they need their evenings to sleep and get ready for the next day's battle.
4. One final thing. Comments are piling up. And yes, Amy and Sahara are reading them. To make things easier for them, please only comment on the two most recent posts. That way, they won't need to scroll through the entire site wondering if people are responding to the older messages. (And no, you don't need to delete old comments.)

Thanks, everyone. Keep the love coming--it means the world.

Start me up

As promised, here's Amy's update for Wednesday. She says she's become an expert waiter. Poor woman even offered to bring me an appetizer. Sorry, A, not in this heat. But if you've got some of that delicious Texas tea, send it right up.

Sahara is LOVING the blog...she can't believe how many people are leaving messages!!! :)

As far as we can tell, Houston rocks. Things have gone so smoothly so far...we got a call on the way to the St. Louis airport yesterday that made it even better: we were able to get a room at the Ronald McDonald House!!! YEAH!!!

Got to Houston right on time, were picked up by our very own town car (Sahara thought it was cool that a driver was waiting with our name on it...LOL), and were checked in by 9 pm last night. What a blessing.

We're in the doc's office right now. They're getting everything together, and have already done more testing on Sahara than they did in St. Louis. I'm sitting here typing, because they have internet available for patients in the exam rooms!! How cool is that??

Everyone here is amazing. This place is the size of a small city. The RMDH is literally only five minutes away. I will write a whole chapter on the wonders of the RMDH later. Our spirits are higher now than they've been since the diagnosis. We really feel like we are now where we're supposed to be.

Special thanks to Derek Staples, pastor of Lynwood Baptist Church, for driving us to the airport and loaning us a wheelchair. Derek, you are AWESOME.

Keep praying!

Numbers

Amy, Shannon and Sahara the Wonderkid are in Houston with the jolly German. I'll give you the full update tonight--but just a quickie. Their spirits are good, and they met with the doctor and started the testing process today.

Also, I revised a number on a recent post. Sahara's stupid tumor is Stage 4, not Stage 7. Stage 4 tumors are not welcome in her head, either. So, if the tumor is reading this blog, kindly go away. Haven't you noticed the "No vacancy" sign?

Deep in the heart of TEXAS

Bonus points to whoever can identify the artist: back in the birthday twin's country days, she used to love a song called God Bless Texas. Who was that?

Oh, never mind. But God bless Texas, and everyone at MD Anderson in Houston, where Sahara is headed today. Listen, Miss S, if you would like to impress that German doctor, beam at him and offer: Ich bin krank. Mein kopf, dummkopf! (I'm sick. My head, dumbass) And if you really want to impress him, there's always the handy Mein puttenspieler ist kaput which is the incredibly useful "My record player is broken." Also tell him you like everything mit schlag which will get you whipped cream, even on your powdered eggs.

Unfortunately, I've forgotten the rest of my German and cannot instruct you further. It's a good thing your new doctor isn't Russian.

Whatever he or she turns out to be, I think your trip south is wonderful. A lot of people are pulling for you. Get down there and try some real BBQ, and then let that German cowboy get to work on your head. For those of you inclined to pray, add one Dr. Wolff to your list. From God's ear to his hands.

Amy's latest:

There are too many great things going on in the medical world to just simply settle for the status quo. To start chemo would mean permanently excluding her from any other type of therapy, and she would not be admitted into any other program.

M.D. Anderson Cancer Center in Houston is our next stop. We are flying out Tuesday afternoon, and she has an appointment at 11 am on Wednesday. They are doing clinical trials and having amazing results. They also have equipment that is straight out of Star Wars, that no one else in the country has at this time.

Check them out at www.mdanderson.org. We are seeing Dr. Johannes Wolff, a jolly-looking German doctor who is leading clinical trials to save the lives of children.

Within the course of two hours this morning, I managed to get all of her pathology reports and tissue slides sent from St. Louis to Houston, requested that MRI's from here be burned onto a cd to take with us, and was waiting for a call back with an appointment time.

My precious nephew Darrin helped me with all of this, because Shannon had to work today. Meanwhile, we had friends working from another angle (God bless the Tegel family)...and by 1 pm I had the Wednesday appointment. It all fell into place, just like clockwork. I've heard it can take weeks to get in...but we hit the jackpot.

I have no idea how long we will be in Houston. They told us to pack for 3 to 5 days, and if she starts treatment, it could be much longer. I just want some encouraging results.

The outpouring of love, support and prayers has been absolutely astounding. Our church family from Lynwood Baptist, all of our friends and family members, teachers and principals and school personnel, neighbors, people we barely know...we have literally fielded hundreds of phone calls, from people near and far, who all love Sahara.

The messages being left onthe blog just make my heart soar. We are scared to death, numb from thinking, hoarse from talking on the phone, and exhausted from all of it. And we haven't even gotten started yet.

Please keep praying and thinking of us. We need all of the positive energy we can get.

Meanwhile, Sahara lounges in what would ordinarily be considered the lap of luxury, as people bring her things like yellow roses, stuffed animals, balloons, more cheesecake (LOL), cards, a prayer shawl from the Methodist ladies, a prayer cloth from the Pentecostal church, a Furby (which scared the crap outof Shannon when it talked as he walked by), games and fuzzy socks, a Hello Kitty pillow, an autographed Pat Summitt photo (GO VOLS), and the list continues to grow.

All of these wonderful things are given with love to a girl whose eyes continue to sparkle, and who refuses to think negatively. Her sense of humor was in back in rare form today,when some of her wonderful friends visited (thanks,Gunnar, Lexi, Caroline and Emma). She acted as if she didn't know who Caroline was...which totally freaked out the poor girl to the point of near-tears. That was just plain mean...but funny when Sahara said she wasjust kidding. That's my girl. (Sorry, Caroline...LOL)

I've been packed since yesterday, just in case they would have told us to catch a plane earlier. Our wonderful pastor Derek Staples is driving us to St. Louis tomorrow so that we don't have to deal with traffic, parking, a shuttle, etc. Sahara has to have a wheelchair and he has one at the church that they are loaning us for the trip. I dread putting her through the journey, she's still so weak. And I know she doesn't want to leave home and her pets again. None of us want to leave - but we have no choice.

Special thanks to the Jones family and the DeCourseys today...you are truly amazing people. We love you.

Love,
Amy, Shannon and Sahara