Secret Santas

Well hello and good evening...

When we got back from Houston, we walked in the house to see that there were a ton of presents under our Christmas tree. Turns out that Santa (aka Jennifer Hecht and Tracy Haggerty) took care of presents for all three of us while we were away. I was flabbergasted. The giving never ends. Tonight, Jennifer, Dan, their kids, Evan and Erin, and Frances (the perfect Gramma) came over, hauling gifts from all of them, and more!

Thank you so much! Sahara absolutely loves everything!

We had a lovely Christmas. Went to my sister's house for lunch with them, my nephew and his wife and five kids, and my brother-in-law's 91 year old father. The man is an angel - and still sharp as a tack, though he can barely see, has trouble hearing and major trouble getting around. He and Shannon talk endlessly about sports, and S is amazed that Mr. B knows team standings, statistics, scores, upcoming games, etc. It's really unbelievable.

My nephew's kids were a riot as always, and it was a lot of fun. We stayed about an hour and a half, and by the time lunch had been eaten and gifts had been opened, it was almost time for me to change her IV bags. We made an apologetic early exit and went home. Spent the rest of the day watching tv and enjoying being at home. It was especially sweet this year and we truly appreciated spending time with each other.

Shannon gave me two gift certificates for massage, and Sahara (little stinker) bought me, with her own money, a gift certificate to Victoria's Secret. I was very grateful for such thoughtfulness on both their parts.

I have been wiped out this week - functioning on a have-to basis and getting things done as needed. This nursing gig is quite the challenge. Sahara's the best patient ever, but is very dependent right now. Her balance is still wobbly, so Shannon and I are running up and down fetching eats and drinks. I am not complaining, though, because she is feeling SO great these days. She looks so much better than she did at the concert - her smile has improved greatly, her eyebrows are filling back in, and her cheeks are pink and chubby.

I'm trying so hard to get my house back in some sort of order. I've never seen such a mess...it's as if we just moved in, there is so much stuff piled up in every room. I made a major dent in it today, managing to get my living room cleaned up so I wouldn't be mortified when Gramma Dooley walked in. LOL.

All snug in their beds

Everyone is home, safe and sound. Sahara and her entourage were headed to Amy's sister's house for Christmas day, and the rest of us, whereever we were, were either holding our bellies and moaning "That was SO good, but why did I eat SO MUCH?"

Amy will have an update once things are settled; I'll pop in when there's something to say. Right now, my husband and I are getting ready to have our own Christmas. If we'd brought the gifts on the road with us, we would have been in deep trouble. And if we had taken his Beetle (he has the convertible, I have the hardtop) we would have been in crisis mode.

I did have one cool Sahara moment during the trip: at Christmas dinner, my brother Davy tossed in a comment about Gramma Dooley. I whipped around so fast I think my eyeballs got bruised. (I didn't know my family was following the site.) "I want a bracelet from Gramma Dooley," he said. Proper big sister and Sahara supporter that I am, I pulled one right out and handed it over. So now she's got fans in central Ohio, too.

And to all a good night

Merry Christmas--and if Christmas isn't your holiday, then I'll simply send wonderful wishes for a happy and healthy day. I'm safe and sound in Ohio (eleven hours in a Beetle should win me a medal) and I'm sure Amy, Sahara and Shannon figured out a way to stuff everything into their car and head north. We did hear something about a bald guy strapped to the top of a car in North Texas, yelling something that sounded like "Go Titans" but I figure it's Christmas. They probably let him ride in the car.

As soon as I pull my husband from the pool, we're off to my parents' house. Let the fun begin.

Warmest wishes,
pamela

And the glory of the lord

Leave it to Amy. The other day, she fretted that this was the first year she didn't send Christmas cards. Woman, we all understand.

But in the spirit of the season, we've found a way. While Blogger may attempt to shrink this down a bit, if you click on the card to your left, it should open in a readable format.

Christmas is about miracles, joy, family, and love. I have no doubt that on Monday morning, when they tumble from their beds to see what Santa has left under the tree, Sahara, Amy, and Shannon will feel very blessed indeed.

A week ago I wouldn't have known the difference between a hemostat and hemoglobin. But I do now. I have to use two hemostats when preparing Sahara's IV bags, clamping and unclamping the ports as I do the work. As I suspected, I have absolutely NO strength in my hands, particularly the left. Each bag has to have all of the air bubbles removed before attaching them to the pump. It's a three-step process and takes about 45 minutes (I'm told that I will get faster as I get used to dealing with this). I know that I'm improving my time each day, but WOW, are my hands sore!!! All this and a workout, too. LOL.

I've been in class nonstop since Monday, and I think my mind is officially full. When I first opened the binder of training information last week, I thought there would be no way I'd be able to do this. I think it's one of those situations in which if they told you beforehand all you will be required to do on this treatment, you'd be too scared to commit yourself to it. Especially the chapter about drawing blood...shudder. I do not "do" blood. Ever. Yuck.

I found out today, much to my amazement, that drawing blood out of her catheter is the EASIEST thing I have to do! I was fine with it, and Sahara said I did a good job (her opinion really matters the most). I probably won't have to do this all the time, but they require you to know how to do it.

This medicine gets increased each day, according to the tolerance of the patient. The doc told us yesterday that Sahara is taking higher doses (without any side effects) and at a more rapid rate than any child they have ever treated at the clinic. (She always has to be the one to stand out in a crowd. LOL.) This, plus the fact that I'm apparently a good student and have caught on quickly adds up to something really great:

We will be home before Christmas!!!!!!!!

We are cutting off a full week of training and adjustment time. I can't believe it!!! We had totally prepared ourselves for three weeks, including stocking the pantry and fridge and putting up a Christmas tree! (Special thanks to those of you who have sent presents! Now HOW am I going to get all of this stuff in my car??? LOL!) We will have to pack it all up and somehow stuff it in the car, along with two weeks' worth of supplies, which includes FIFTY IV bags, thirty of which are 1000 ml, twenty which are 250 ml, and all the fun stuff that goes along with doing the treatment. I told Sahara she'll probably be sleeping on top of suitcases on the way home. LOL.

The days have been long, and sometimes very tiring, and it's been intense at times. But Sahara's doing SO well, and I feel great about what we are doing. We've met some amazing people at the clinic, from the wonderful staff to the brave patients. Today we met a couple from LA who have gone to four different countries in search of help for the man's tumor, to no avail. They recently arrived at Dr. B's, and are, like myself, very pleased and upbeat about the treatment. The waiting room always has people from all walks of life, each of whom are fighting their own personal battle with cancer. Here's a definition of the cruelty of a brain tumor: a man from California has the same type of tumor as Sahara, but his is growing forward, toward his optic nerves (this is the typical pattern; Sahara's, however, has grown backward). He is/was a photographer...but now he has double vision so bad that he can no longer do the work he loves, and he is fighting for his life. It seems especially wrong.

This treatment is not easy. It requires a lot more time and care than I anticipated, and it's going to take a lot of getting used to. It is inconvenient, cumbersome and a general pain, but, on the other hand, it is non-toxic, has only minimal side effects, and works really well on brain tumors. It's a pretty sweet deal, if you ask me.

Two more days to go! Shannon's coming down Friday and we will make the trip home over the weekend. Being at home for Christmas, and having Sahara with us - that's the best present of all. :)

Love,
Amy

Joy to the fishes in the deep blue sea

Rhonda Hunt's wonderful photos are up on Rick Springfield's website. She captures the joy in her subjects. Case in point--check out this shot of Rick and Gramma Dooley. Could they be cuter?

The holidays are officially underway. Today, I listened to friends and colleagues trade tales of latkes; the concensus is that they're often left to the men. I love to eat them, but the thought of grating potatoes and onions for hours, by hand, does not thrill me.

I still remember my first latkes: I was in high school, and my friend Linda, who was Jewish, invited me to her synagogue for Shabbat services; the cantor was mesmerizing, but then after the service, we went to the dining room and I had my first warm potato pancake, with sour cream and applesauce. I couldn't wait to tell my mother. I also had my first eggplant that night. Let's just say it didn't make quite the same impression.

This year I am not baking Christmas cookies; last year I attempted spritz cookies with Splenda. I'm sure Santa heard the cursing at the North Pole. I put the remnants out for the birds and they flew far, far away.

If they're allowed on Sahara's eating plan, Whole Foods has marvelous little cookies and cakes. Of course, that's IF she and Amy are allowed back on the premises. They may need to send Shannon to pick up a carload of vittles.

What are you doing to celebrate the holidays? Last night, my husband and I went to a concert in a very old church and listened to a quartet sing carols. The tenor sang with such joy--absolute jubilation. This weekend, we'll head to Ohio to play with my brothers' kids. I can hardly wait.

The marvel of $2.49 carrots

Hello, everyone!

Even though the prices are outrageous, I've fallen in love with Whole Foods. Everything from the organic veggies to the shrimp we bought has been fantastic. Since we have our own kitchen and our own car, life isn't bad at all here. I'm cooking at least twice a day, and so far the low-and no-salt food has all been very tasty. Sahara's being so good about eating fruit instead of crappy snacks. She doesn't mind the absence of salt at all, and I can't tell that much of a difference when I use the Nu-Salt salt substitute. She adores Silk brand chocolate soy milk, and has drank nearly two gallons since Thursday! It's loaded with potassium, so it's helping meet her 2400mg a day requirement for that. I swear, with traffic and crowds being what they are down here, it's easier and also so much healthier to just cook our meals here.

Funny thing happened yesterday - I had to run in to Whole Foods to grab another carton of soy milk, so I parked at the front of the store. Sahara wanted to stay in the car and listen to her Ipod. As I'm rounding an aisle, I hear honking. Incessant honking. I had this feeling that it was my car alarm (of COURSE it was MY car alarm). I looked at the front door, and outside on the sidewalk, casually looking at the display of tangerines like nothing at all was wrong, was Sahara. She'd opened the car door for some reason, which set off the alarm. She couldn't get it turned off, so she got out and walked away. She said the security guard kept driving by and staring at the car, but she acted like she knew nothing. LOLOL. We were in this highbrow swanky neighborhood, but apparently the guard really didn't care that our lowly car could've been broken into. This is the land of giant (and I mean the biggest ones made) SUV's. I think regular cars are considered inferior here. LOL. We did have a good laugh over it all.

This marks the first year in my entire adult life that I've not been able to send Christmas cards. Every year, I've had Sahara's picture taken, painstakingly cut them out, wrote her name, age and year on each one, and tucked one into each card. Last year, I made cards using a great photo of all three of us, happy and having fun at a Cardinals game. We had so many nice comments about that card.

This morning I did my first full disconnect and flush of Sahara's IV system. They asked me to do it before I took her in for her blood work and reset of the pump (which raises her dosage of medicine each day). I think I am actually going to be able to handle this. Who knew?

Tomorrow we begin at 10 am, with a complete IV change, and classes for me. Each day these procedures become a little less intimidating. I'm really pleased with how things are going; now we just have to pray and pray that this treatment starts attacking the tumor soon.

Have a great week everyone!

Love,
Amy

What Susan Shot

Susan Fortune got these wonderful shots of Sahara last weekend... and despite the horrible weather in her neck of the woods and no electricity, managed to get them to me and graciously gave me permission to share them with all of you.

If you've just joined us, Miss Pinkhat is Sahara. The hat says CLOUT. The man in the middle, well duh, that's Rick. Springfield. And the lovely lady on the right? Gramma Dooley, live and kicking. Wouldn't you like to know what Rick said to get this look?

Don't talk to strangers

If you have been living under a rock, or were just released from the pokey, or ran away from the convent on Thursday, then perhaps you haven't seen this little performance:

http://www.youtube.com/watch?v=7jpIEO_HUmI

As the sweaty but still delicous Rick said, it's all about her college education. You do realize, with the right combination of miracles, that's entirely possible. Sahara's fighting like a tiger. What are you doing to help?

Water, water everywhere

Another quickie from me... big thanks to those who've sent links to photos and video from the concert. I'll be sharing those this weekend, I promise. Amy, if you read this before you shop, Whole Foods has the BEST apples and carrots. I love their produce! But it's time to get to work.

Good grief, what a busy day! Got to the clinic for our appt. at 9 am, and met for a long time with the nutritionist. I wasn't surprised to find out that we have to do some serious cleanup work on our diet. Sahara has to have a low-sodium diet while on the treatment, and must make sure to get more potassium. She gave us several lists of do's and don'ts. It's kind of intimidating, and it's not going to be possible to change everything overnight, but we are getting started. (Who knew that tap water is full of sodium...I sure didn't.) No more of Sahara's beloved mozzarella cheese sticks. She has to trade them in for carrot sticks. LOL. Tomorrow we're going to go to the Whole Foods Market if we have time, and start picking up the new things we will need.

The MRI's of her spine that were taken yesterday came back clear. They just wanted to be sure there was nothing else to deal with before we began the treatment. I appreciate their thoroughness.

So, at 12:05 today, she was hooked up to her new best friend, the pump that will infuse the medicines into her body 24 hours a day. The pump is much smaller than I anticipated, but you must also carry an entire set of supplies with you at all times. The case she was given looks exactly like a black soft-sided lunchbox. I even had my first experience with caring for the iv, and I was shown how to flush the lines with saline. (Sahara says that I did a good job. WHEW!) I don't have to deal with the needle, thank God, so I think I will be okay. Beginning tomorrow, I will take classes for roughly the next two weeks, learning everything there is to know about administering this treatment, programming the pump, calculating and adjusting medication dosages, maintaining the lines, etc. Funny, I've been considering going back to school over the last year, but I never expected it to be THIS kind of an education. LOL.

We didn't get out of the clinic until about 2:30. We were starving, so we had a late lunch at Chili's, which we love. :) They have some healthy choices on their menu, and the food is always good. After that, we went to Target (oh, no, not again...LOL). Had to get her some stylish new backpacks, because the shoulder bag just doesn't work well because of her balance issues.

We go back in at 9:30 in the morning, and she'll get the first bag change on the iv. I'm trying to pay close attention to everything, because I want to be a good student. :) I've been given a binder full of information that is so far up to 2 inches thick. Yikes.

Extra special thanks to KM - you've already made this trip a lot easier. :)

We're on our way...just have to pray even harder that this new treatment will attack and destroy that tumor.

With love,
Amy

O Tannenbaum

A quickie from Amy or I'll be late to work:

Well, nothing was accomplished today. She couldn't get an appointment for the MRI until Wednesday afternoon. We took Shannon to the airport this morning, then spent the rest of the day running a few errands, and doing some shopping for groceries. Got our little kitchen stocked up, so now I can make some meals instead of going out so much. We're actually getting pretty tired of that.

Unless something changes, she will begin treatment at 10 am on Thursday. I hope and pray there aren't any more delays...we are racing against the clock.

Sahara picked out a little fiber-optic-lit Christmas tree today, which we set up tonight. It brightens up our dull studio. It really doesn't seem like December, or Christmastime, for that matter. Today was really warm and we even had to run the AC in the car! A far cry from the cold we left behind in Cape. We will celebrate no matter where we are, but will definitely have a big celebration once we get back home. Right now, I'm not exactly sure when that will be, since we've not been able to get started on time.

More later when there's news to tell!

Love,
Amy

Do the right thing

I went on a date with Gramma Dooley Saturday night, and for those of you just imagining all the players in this world that revolves around Sahara, she is one of the most warm and adorable people you will ever meet. Even if she did try to touch Rick's butt when he brought her up on stage. (Who wouldn't?)

She brought along two of the quiet heroes in Sahara's army, her daughter Jennifer Hecht, and Tracy Haggerty. Jennifer and Tracy were Sahara's teachers, and both were the dynamos behind the hometown benefits in Cape Girardeau. They are wise and funny, with kids of their own, and they shared great tales of Sahara from her healthy days.

We were also joined by Nancy from Boston, who left her three kids and husband to make the trip to Missouri. Nancy posts here now and then, and she was as lovely in person as she is in the blogworld.

It was an absolute treat to spend the evening with them. Naturally, our conversation turned to "what's next" and more ways to help. Let's just say the ideas are already bubbling.

There are still bracelets and cookbooks available (details on the Help for Hoops page at right). And there is still an enormous need for help. But while we work on the next big events, I'm going to make a suggestion. Way back in the beginning, when Sahara first learned she had a brain tumor on her 12th birthday, she sent Shannon (her dad) to Staples with $20 of her birthday money to buy crayons for kids in the hospital. One of the things that really strikes people about Sahara is her generous spirit.

For the next couple of weeks, take her lead. Find a small need in your own community, and fill it on Sahara's behalf. Whether it's a holiday gift for a struggling family, or an hour visiting a lonely resident at a nursing home, or an outing with friends to pick up trash at the park, do something to show Sahara how much you care, too.

A huge THANK YOU to everyone who attended the Rick show Friday night! It was so wonderful to meet so many of you. We had folks from literally coast to coast! It was such an honor to have you all there with us. Thanks for the gifts to Sahara and LuLu (who is already one spoiled puppy!). It was truly a love fest for our special girl. She had so much fun and held up far longer than I thought she would. She hates to miss anything, but she knows her limits.

I was very grateful that the stage didn't get rushed - and I know how hard it was to stay in one place! We appreciated that everyone gave Sahara her space and didn't crowd her. Rick's fans are the BEST!!!

We drove to Texarkana on Saturday, then finished the trip yesterday afternoon. Got to the RMH, only to be turned away. They wouldn't give us a room because we aren't going to MDA or Texas Children's. No dice if you are a Burzynski patient. I was pretty upset, and I plan on writing a letter to the top dogs, wherever they may be. A sick kid is a sick kid - they shouldn't dictate where you go for treatment. Anyway, we are staying at a Studio Plus. Not fancy, by any means, but it serves the purpose. It's a little closer to the clinic, which helps, because traffic is horrible. I'd rather drive in LA any day.

It has been a long day, but a productive one. We are very pleased so far with Dr. B and his staff. The clinic is awesome and the atmosphere is very upbeat and positive. Did a battery of tests today, but couldn't start treatment yet. Have to get another MRI first. Hopefully we can start treatment tomorrow, or Wednesday morning at the latest.

We love you guys and can't wait to get home!!!

Love,
Amy

Ringing

Home safe and sound, with so much to say and nowhere to begin. I was profoundly moved by the grace I observed again and again this weekend. I can't even talk about it without welling up, so rather than be a big ol' bowl of mushy peas, I'm just going to say thank you. To the usual suspects, and to the heroes working tirelessly at the sidelines.

You all amaze me. For every fool who demands the spotlight, there are a thousand angels with shimmering wings who give their hearts without any expectations. Sahara and her family are so blessed. The saints may be well represented by Rick and Gramma Dooley, but they are flanked by so many others. It's stunning.

And I am blessed, too. I don't know what affected me more: seeing Amy across the arena and then smacking into her like a couple of magnets, or the endless line of people who said thank you for this site. I vowed not to cry this weekend and I didn't. But all of you crawled right into my heart Friday night.

A million thanks. I'll write more tomorrow night.

Oh, one more thing before I go. You'll see a new voice now and then on the site. Shannon writes in Navy. (All you had to do was ask!)

Chapter Two

This is the last you'll hear from me or Amy until after the weekend--I have an early flight tomorrow morning. For those of you hitting the roads or skies to be there tomorrow, safe travels. For those of you who will be there in spirit, send good vibes and give someone you love a big smooch.

Sunday's early post was indeed a rough one, and many of you wrote to me privately to share your reactions. Thank you for that--it touched me and Amy, too. Sahara and her family spent the week considering their options, and in a moment, you'll see what they decided.

Just a couple more things before I shut up: remember, Sahara is a young girl, and while her spirit is enormous, her health is a little fragile. Please respect her boundaries.

Tomorrow night is a celebration--of life, of hope, of faith, of music, of joy, of all that is good.

See you then!

Hello everyone,

It's been a long week, and we are all SO ready to have some fun on Friday night! Safe travels to everyone who is coming to Cape Girardeau. We are so happy that you are attending the show and hope you have a great time.

We have, so to speak, "backed up and punted." During the time that we were at MD Anderson, I continued to do research on treatments for brain tumors. I knew we had to have a Plan B ready in case things did not succeed at MDA. There are so many promising treatments out there; not all of them are in the realm of traditional medicine, not all of them are in the United States, and not all of them are accepted by mainstream society.

Time after time, as I studied as much information as I could, the name of the Burzynski Institute in Houston kept popping up. We've even had a couple of encounters with people whose lives Dr. B has touched. He has made remarkable progress in treating a variety of cancers with what are called "antineoplastons." He has had some amazing results in treating patients with brain tumors. They are conducting a number of FDA clinical trials with these ANP's...and Sahara qualifies for one that targets tumors like hers.

Plan B is now in full swing, and once again we are Houston-bound. Paperwork has been submitted, medical records have been transferred, and on Monday at 8:30 am, Sahara will become a new patient at the Burzynski Institute. By the grace of God, Monday marks the exact day that enough time will have passed, post-chemo and post-radiation, in order for her to begin the new treatment. We'll be in Houston until her ANP dosage is established (they are going to try very hard to have us home by Christmas). We will be trained on every aspect of the treatment, including administering them to her ourselves. After that, we will be doing her treatments at home. ANP's are non-toxic...they are not chemotherapy. They work to reprogram cells, getting rid of cancer, and bringing back healthy cells. They are administered through an IV with a small, portable pump (via the portacath that she already has implanted in her chest), 24 hours a day. She will be free to do as she pleases, because the pump will be contained in a small backpack. It might be a bit inconvenient, but we hope to someday look back and know that it was totally worth it!

As a family, we decided that Sahara has had enough chemo, and we don't want to put her through it again. The side effects of the options we were given at MDA (for new clinical trials using stronger chemo combinations) were horrendous, and of course there are no guarantees that they will do any good. We are going to take a new direction, and I'm sure there are those who will disagree with our choice, but the research shows that this treatment is saving the lives of patients who might not otherwise survive.

We have nothing but good things to say about the wonderful doctors and staff at MD Anderson. Throughout it all, they were the most supportive, helpful, caring people...and they have told us that they will be there for us if we need them in the future. I have the utmost respect for that institution, and especially for Dr. Wolff. We just didn't get the results we needed to achieve.

Sahara is ready to get started, although she's not looking forward to being away from home again. At least it's only for a couple of weeks instead of months. She continues to be a fighter, and believes with all her heart that God is working to cure her of this disease. This is just the next chapter in the book. We thank you all for your continued prayers and positive thoughts as we begin the new treatment.

Can't wait to see everyone at the show Friday night!

With love,
Amy

Something EXTRA

A big thanks to Rosie (I will send her all my snow when it arrives) for forwarding links to Rick's TV appearance this weekend. It's easiest to view on Youtube, so long as you promise not to look up naughty video of Britney Spears.

http://www.youtube.com/watch?v=vs1eBHRK4vI

Finding the right words

By now I think most of Sahara's regular readers know I'm a writer in real life. In real life, it is fairly easy to come up with the right words to share something with feeling, to give it life and breath and color. It comes naturally to me, just as Sahara's ability to dribble a ball or gravitate towards the strongest athlete in the room. I don't even try to explain it, I just accept that it's my gift from God and that I have an obligation to do something more with it than write trivial crap.

But that's not always so easy. I'm sitting in my home office watching the sun come up, drinking warm, flat, watered down Diet Coke, and my fingers don't want to move on the keys. I got up to visit the bathroom around 4 this morning (thank you, four iced teas I had at dinner, for that) and stumbled in here to check my messages. And I've been fighting this blogbit ever since.

Amy asked me to dress this up, but I just can't.

Our nightmarish journey to Houston is over. The ice and snow storm in St. Louis were only the beginning of a trip none of us wanted to make. I will say this, however...the people at Southwest Airlines are absolutely wonderful, and I can't say enough about how much they all went out of their way to help us.

They told us at the beginning, when Sahara first got sick, that this was going to be hard. A truer statement was never spoken. Our greatest fears became reality yesterday, when we got Sahara's MRI results. The tumor has not shrunk any more, and has in fact grown since her last MRI on October 30. We knew by the way she's been acting and feeling for the last week that something was not right, and now we know why. We have been given some new options, which we are going to be considering this week. Our prayer is that we will choose the right one, and that God will send us in the direction that we are supposed to follow.

Sahara is feeling a bit better, remarkably, even though she has been through hell these last couple of days. Her steroid dosage has been increased, which helps a lot with everything. She's just glad to be back home, as we all are. And she's looking SO forward to Rick coming in on Friday - it is going to be a such a wonderful time in the middle of the storm we are facing.

We ask for your continued prayers, because we know the power that they hold. As we mull over our options this week, please keep us in your thoughts. As we told Sahara last night, we will never, EVER give up.

With love,
Amy

Oh the weather outside is frightful

But takeout is so delightful...

Apparently those of you in the midwest have decided to play winter. Fools! It was 68 in New York today. My roses are still in bloom. Why, oh why would I want to deal with ice and snow? Y'all can keep it.

Unfortunately the storm's wrath slammed the little Aldridge clan hard. They are holed up in a nice little hotel just outside the St. Louis airport. Their flights were cancelled. They're working on getting re-booked for this morning, but with all that snow on the way, it doesn't look good.

Amy managed to find the one restaurant in town that would deliver, thank goodness, and despite her fear that their car is back at the airport in a 14-foot block of ice, they're still hoping to get going sometime today.

Would it be so terrible to pray for a quick thaw?

The best-laid plans

Hello everyone,

Well, we're off to Houston again today, with hope in our hearts. Sahara is feeling better; not great, but well enough to travel. We have a full day of appointments on Friday. The MRI is the scariest thing, as usual.

I'm looking forward to visiting our friends at the Ronald McDonald house - I really miss the folks that we became close to while we were staying there! We plan to drop in when we have time.

LuLu the Wonderpuppy has found her place in the Aldridge clan. She is sooooo cute, and smart, too! She's quickly learning that the backyard is her bathroom - NOT the basement floor! I appreciate the housetraining tips we've received, and once we get back from Houston we will begin training her in earnest. This week has been touch and go, but she's done exceptionally well. She is a brand new bright spark in Sahara's life, and rarely leaves her side. Animals are such great therapy! I'd really love it if someday we can get her certified as a therapy dog...I've seen what wonderful effects they can have on sick children. I'd like to be able to give back, as so many have given so generously to our family. Aunt Sissy is puppysitting this week, and LuLu has promised to be a very, very good girl (as long as she can sleep in Aunt Sissy's lap.) LOL.

A few extra prayers couldn't hurt, and we certainly appreciate them if you have the time...we'll be in touch when we get back. Keep thinking those positive thoughts. :)

With love,
Amy

What goes up

I have been cured, and I'm crediting the pie. Listen, they always told us fruit was loaded with vitamins and antioxidants. Surely that counts if you eat it mixed with cinnamon and splenda, right?

Okay, I'll give some of the credit to the prescriptions--and to my wonderful doctor. He is one of those great docs who cares just as much about what I'm thinking as what's going on with my body. If your physician isn't like that, go find one that is. Life is too short to fear the man or woman who holds your health in his/her hands.

Sahara's health is on the droopy side this week. To condense things into a neat package, she stopped one of her meds last week (as the doctors ordered) and coming off of it has been rough on her system. She's having difficulty doing some things that seemed easy and painless last week. And naturally, that's scary and frustrating. Having been on the same medication myself, I know it is not easy to adjust to a change in dosage. But in time, things usually even out.

Anyway, if you're reading this tonight, send some healing energy in her direction, or send a prayer skyward. Tumor kicks should be a routine matter for all of us, but go ahead and double up on those this week. On Thursday, Sahara and her parents head down south to Houston for a visit with Dr. Wolff and some testing.

I've got a special request: if you want to buy a cookbook and you're not a local resident, please do so through the link on the Hope for Hoops page. I know some of you have contacted Gramma Dooley, who is indeed selling them around town. But for those of you who live too far down the road, please use the link Sheryl Henley has set up.

Oh, one more thing. There's a new Aldridge family member. Lulu is black, white, wiggly, and all of 10 weeks old. She's got that border collie look, for now. Amy says she's sticking to Sahara "like glue." If you're sending vibes, would you mind blessing the pup with the ability to pee outdoors, just a wee bit faster? Gosh, thanks.

Pie oh my

Must...put...down...fork...and...blog...

The wonderful thing about not hosting Thanksgiving: you don't have to deal with the leftovers.

The bad thing: you don't HAVE any leftovers.

I have been thinking about my mother's stuffing all week. Nothing compares. I haven't had Thanksgiving with my side of the family since before we were married, and while I've learned new tastes and traditions, it is HER dinner I yearn for each year as I sit down at the table. Sometimes the simplest things are the absolute best.

I did manage to bake this year, in between fighting the bug that has returned to torture my chest yet again. I am trying to cure it with pie. I won't go into the whole tale here, but if you are in the mood, it's on my own little blog, Fat Lady Sings. And to answer the follow-up question, no, you really can't tell it's Splenda.

For those of you who don't give two toots about pie, there's an update on the Hope for Hoops page regarding the Rick show. For those of you with Gold Tickets, heads up. The reception will now take place after the show. Doors open at 6:30, show starts at 7:30.

And now to Amy:

Hello everyone!

I hope that all of you had a wonderful Thanksgiving! We stayed home, just the three of us, and had a perfectly lovely day together. It was one of those days when everything just fell into place and was completely stress-free. Our friend Bill deep fried our turkey (which just HAS to be the best way on earth to prepare it....YUM), I baked a small ham, sweet potato casserole, corn, dressing, mashed potatoes, Parker House rolls...our family loves our carbs...LOL. I made a pumpkin pie for Sahara, a chocolate pie for me, and cheated on Shannon's pecan pie (got it at Wille's Bakery...they are incredible!). We watched movies and football and ate all day long. We are truly blessed and have so much to be thankful for.

Sahara had the last dose of chemo for this cycle on Monday. She's now off of it until December 18. This week she's also been weaned off of the prednisone, which is kinda tough. I had gotten used to her being so wired while she was on it, but now she's more subdued, and isn't quite as perky today. The roller coaster ride continues. Her PT and OT are going really well, and they are really giving her some good workouts. She looks forward to her sessions each week.

Just two weeks until the Rick show!!! She's looking SO forward to it and it is going to be a great time! Rick and his crew are absolutely the best.

I've been promising a "Best of Cape" list for all of you wonderful out-of-towners, so here goes:

Best restaurants:
O'Charley's (Sahara's official restaurant...try their Loaded Potato Soup, and if you want it Sahara-style, have them strain out the potatoes, which makes it "Cheese Soup"...lol...their Zesty Orange Chicken, Caramel Pie...oh yeahhhh!)
Texas Roadhouse (great salads & steaks)
Pagliai's Pizza on Broadway (wood fired and absolutely incredible...best sauce on the planet)
El Torero on Broadway (best Mexican food around - ask for Antonio)
Blimpie's on Broadway (great subs)
Cracker Barrel (always, always good)
My Daddy's Cheesecake (has a cafe and all kinds of treats...try the Key Lime Cheesecake!!!)

Best shopping:
Kohl's (who doesn't love Kohl's, I ask you)
Barnes & Noble (brand new at our mall)
West Park Mall (it's small, but there are some good stores: Macy's, Old Navy, Steve & Barry's, JC Penney, American Eagle, etc.)
Downtown Cape (kitschy shops, antiques, cool cafes)

Best place to find Rick stuff:
P-Mac Music on William Street (the official welcoming store for Rick, and Sahara's official CD store...ask for Eric or Paul) - check out their banner in front of the store!

Best hotels:
(okay, we're not a big city, but these should be nice)
Drury Lodge (offering a special to Rick fans)
Drury Suites
Holiday Inn Express (just opened this summer and is close to everything)

Cool places:
Downtown riverfront....right on the Mississippi River, great views, really beautiful
Trail of Tears State Park (where the Native Americans came across the river...there's an interpretive center that is very moving)
Old St. Vincent's Church downtown (if you enjoy history and architecture, you must see it)

There are several wineries in the area, and I will get their info and post their websites asap. If there's anything else I can come up with, I'll post those things as well. I hope this is helpful!

It's great to have a few days off to relax and recharge. I hope that everyone who reads this is enjoying some time with family and friends. I think I need more chocolate pie. :)

With love,
Amy

We've got spirit yes we do

Hello everyone, and happy weekend to you! Sahara has had a great week! She sailed through chemo again without getting sick, hallelujah! She even felt like going to school for a couple of hours on Tuesday. That was the highlight of her week, without a doubt. For days and days, she had been trying to get all of her school supplies (the ones we bought in JUNE) organized and ready to go. It was a very positive "first day" for her, and she loves her school. Thanks to her wonderful teachers and friends for showing her the ropes!

She also began homebound classes this week. Reality says that she can't go to school full-time, which is such a drag for her, but she has really enjoyed what she's been working on at home with her teacher, Mrs. Goode. It's so great to see her looking forward to class time. :)

Physical and occupational therapy has been going extremely well. Her balance has improved quite a bit this week, and she is getting some great exercise in the gym. She has always been such an active girl and I know she is glad to be moving again. And as of today, her OT says that she appears to have full range of motion in her right eye - this is incredible news! The left one still has limited side-to-side movement, but they are doing eye therapy to see if they can get it back to full strength. Eye therapy - who knew? We continue to learn more and more.

Lady Redhawks basketball officially began this week, and it's about time! We are all very disappointed that Coach BJ is not with the team any longer, but we will keep on supporting the players and coaches that remain. We're looking forward to the day when Sahara has enough strength and confidence to be a ball girl once more. For now, she's an enthusiastic spectator!

It's been a very positive week and we are so blessed. Thanks to everyone for keeping our family in your thoughts and prayers...I have no doubt that it's working. There's a church nearby that has the greatest words on its marquee, and it makes me feel good each time I drive by:

Time changes
Weather changes
Jesus is the same

Hope everyone will find something fun to do this weekend!

With love,
Amy

Please don't squeeze the charmin(g)

I'm cranky. Could be that in the space of oh, three days, the rain did a number on the maple tree in front of my window, and it's now stark raving naked. We've lived in our house for six years, and in all that time, we've never really known what color the maple turns in autumn because just as it's starting to go, we get a mini-monsoon and whoosh, the leaves are stripped off and end up brown and crackly in the yard.

Well, they are yellow: a sunny span of orangey-egg yolk yellow with hints of good Wisconsin butter. Or so they were, before the rain stole the one-week show. But I guess I should count my blessings. Shouldn't we all?

So anyway, I've been thinking a lot about Sahara and all the shows she'll attend over the next month or so. And, of course, about all the people who are pulling strings, cajoling bosses, cashing in airline miles, and eating ramen noodles so the price of a ticket isn't so terrible, especially in December when the holidays are fast approaching. And it leaves me in awe.

But it leaves me scared, too. People, I know your intentions are good. Truly. But I'd like to ask you to remember that this is a 12-year old girl, and in all reality, many of you are strangers. Being 12 can be tricky enough. Being 12 when you are busy kicking a tumor's ass is trickier still. When you are 12 it is not always easy to tell others, especially adults, to take a step back.

Pray for her, admire her, adore her, love her spirit. Give her a high five. Cheer as she approaches. (Get down on your knees and bow to Amy, of course...) Just remember, she's a kid. Say hello. Introduce yourself, tell her where you're from, and keep it light.

If you are someone already in Sahara's world--one of her friends or family members from Cape or the surrounding areas, you'll have a better sense of what Sahara is comfortable with. But if you are a friend from the blog, the Rickworld, or another site, then please join me in treating her like you'd like a stranger to treat your daughter or kid sister.

Friday, I left work early to go home and get Sahara ready for physical therapy. We decided to run by her school for a minute and get her ID made - she's wanting to attend some classes as she can, so we want to have things in order. Everyone at CJHS is absolutely wonderful, so helpful and accommodating. Her principal, Mr. Meredith, was leading us down the hallway toward the library when...the bell rang. WHOOSH! Hundreds of kids in the hall, and I could hear them - is that Sahara? It's Sahara! We ducked into the nurse's office to stay out of the way, and before we knew it, there were tons of kids AND teachers right outside the door, pouring into the office. LOL. It was GREAT! Then a bunch of them shouted, "we love you, Sahara!" Have I mentioned how much I love these kids??? After the mayhem calmed down, we finally made it to the library to get her ID card made. We had a really great visit to the school. :)

We then crossed town to her PT appointment. Her therapist's name is Steve, and we all hit it off very well. He ran her through some tests to see where he needs to start, and he has decided to focus on balance first and foremost. She has good strength, despite all she has been through. It was a very good session. Got our appointments for next week and were on our way.

Saturday started off with a bang - a 9 am showing of Grease at the Town Plaza! I was amazed at how many people showed up on such a blustery, cold morning! We had so much fun, and we get to do it again tonight with a whole new group of people! Extra special thanks and eternal gratitude to Jane and Charlie Hirsch for organizing these fun events (you guys ROCK and we love you!), and to the Town Plaza theatre for hosting the movie for us. It was really special for me, because 25 years ago when Grease first came out, I went to that very theatre to see it. It was the first time I'd ever seen a movie twice in one summer - I was totally crazy for it. I remember buying the soundtrack album immediately afterward...and the rest is history. LOL.

The Sunday night Grease show was a blast. We were picked up by Danny Essner from the River City Rodders, in his candy apple red and white 1955 Chevy Bel Air. (Thanks, Danny!!!) Sahara and her dear friend Madison were SO excited! Shannon was a big chicken and stayed home for more football while we girls went out to party. When we got to the theatre, there were more classic cars out front to greet us, and it was SO cool. Got to see a lot of friends at the show, which was such fun. Gramma Dooley and Jennifer Hecht sat with us, and we had a great time! Danny gave us a ride home in the Chevy afterward, and I have some hilarious photos of Sahara in the driver's seat. I have a ton of photos I need to upload, and I will try to post some to the blog very soon.

Less than a month until the Rick show! We are so thrilled and honored by how many people are coming from all over the country to attend. Our town will do its collective best to show you a great time when you get here. I'm going to get to work on a list of things to do and good places to eat, and I'll post it as soon as I can.

By the time you read this, Sahara will have had another dose of chemo. Hoping for another smooth ride like we had last week. We have been so blessed by how well she is tolerating the new meds. She is so strong and so determined, and continues to inspire me every day.

With love,
Amy

I've got chills, they're multiplyin'

It hit 71 in the city today. I don't know about you, but I think I like this global warming stuff. Mid-November, and I have the windows open. Not so terrible, is it?

Lots of email traffic this week and I'll take some time to update the HELP/HOPE page this weekend. We've got more info on the dance performance, a cookbook, and Blimpies is getting in on the act, too.

Hello, everyone!

We began the next step in our journey on Monday, with Sahara receiving her first outpatient chemo at St. Francis. She sailed through it with no problems at all. Stacey, our new nurse, really knows her stuff and has such a great personality. She's a Rick fan too...another mark in her favor! LOL.

Last night was the time I had really been dreading. She took her first dose of CCNU, a very powerful chemo drug that is often used to fight brain tumors. It is one of the few drugs that can penetrate the blood-brain barrier. It is also wicked, a very potent drug that lasts for six weeks in her system, and can have some particularly nasty side effects. Dr. Sides (our doc here in Cape) gave us all sorts of warnings about how sick she could get after taking it. After I gave Sahara the capsules, I was prepared for the worst. I put the trash can right beside her and slept beside her on the couch.

She slept the entire night, woke up fine this morning, and asked for eggs and toast for breakfast. LOL.

I am SO relieved - the first dose is done and she's tolerating it! This drug can cause white blood cell and platelet counts to crash between 4 and 6 weeks from now, so we have to keep a close watch on her counts. Let's just all hope and pray that she stays WELL the day of the Rick show, because if she had to miss that on top of everything else, I think she will spontaneously combust with frustration.

Speaking of that frustration, she wants so badly to go back to school. The paperwork has been submitted to get her started on homebound instruction. She will also be able to go to some classes at school as she feels like it. Sahara is bored out of her mind and misses her friends! With luck, next week she'll get to do some things.

I want to thank blogger Michael Manning for pulling off yet another seemingly impossible act for Sahara - he's chartered a bus to bring fans to the concert from Cincinnati! This is incredible! We are going to have such a fantastic crowd at this show!!!

Well, time to get back to family business. Laundry stops for no woman. LOL.

Much love,
Amy

The big drip

Hello, everyone!

The past week is a blur, filled with what used to be our normal lives, on top of all the stuff that should NOT be part of them. Sahara is feeling better, and has been able to venture out of the house a couple of times. Her white blood cell count is rising, so that is a relief. Tomorrow we start the next leg of our journey, with outpatient chemo at St. Francis. She tolerated this chemo pretty well while we were in Houston, so we hope that will remain the case as she starts it all over again.

Sahara even got to enjoy a bit of Halloween, visiting her cousins on Halloween night, doing a bit of trick or treating at the Osage Center, and stopping by our dear friends, the Tegels. She was so glad to do something besides stay in the house! We were all wiped out from the trip back from Houston, but in typical Sahara fashion, she was determined to have some fun. We dressed her in some scrubs, a mask and a beanie, and she was Doctor Sahara for the evening. LOL.

I understand that tickets to the Rick show are selling really well, and we are looking forward to seeing many of you there! We are going to have such a great time.

I can't believe how fast time is flying by...Thanksgiving is right around the corner...yikes! And this coming weekend is our "Grease" extravaganza! We can't wait to see everyone and sing at the top of our lungs to those cool, cheesy songs. We just have to convince Shannon to go too...I have embarrassed him more than once by singing those songs. LOLOL.

Extra special thanks going out tonight to some wonderful people: Allycen Farnsworth, Amy Shelin Primorac, Renata Hearn, and Paul Belfi...you guys ROCK. Be sure to listen to Rick Radio for some special stuff coming up!!!

And as always, a continual, ongoing thanks to each and every one of you for your thoughts, prayers, gifts...you are all so special and we are grateful for all of you. :)

Here's hoping that you all have a great week, and that Sahara handles being back on chemo again in her strong, steady way.

With love,
Amy

Button, button, who's got the button

Big cheers to Susan Fortune, who sold buttons for Sahara and just sent a check for $750 to the Hope for Hoops Fund. Little things add up--and make a huge difference! Thanks, Susan!

This morning I updated the Help for Hoops/Hope for Hoops page. There's more info on Cinema for Sahara next weekend (Tell me more, tell me more), and a few of the benefits have been completed, so they're gone.

Of course, if you've finished your event and would like to share results here, drop me an email and I'll notify the troops.

Thanks, everyone. You matter.

Trick or treat

Got your candy ready? I went to BJ's last night (sort of like a Costco or Sam's Club) and discovered that other people have figured out my secret: the big bars are often cheaper than the fun-size. The candy section looked like a bomb hit it. I managed to get 3 boxes of Crunch bars and a box of Skittles. Bring it on, I say!

A few years ago I gave out gum--packs of Bubble Yum, Bubbilicious, and assorted dentist-sustaining fruity crap. I had so much left over, I boxed it up and sent it to Sahara. Now, of course, every time I see her in her braces, I cringe a little. They're all my fault!

I am not dressing up--but if Amy were, she'd surely be Sleeping Beauty.

Got to the hospital at 8 am, and started the day by getting blood drawn, vitals taken, and an IV put in place for her MRI, which was scheduled for 10:30. Finished all of that, then crossed the hospital to see the audiologist for followup testing. Her hearing is just fine, only a teeny bit of a dip in the high range of her left ear. Nothing to be concerned about, because she's done so well in tolerating the chemo so far.

Went down a few floors to the MRI department after the audiology testing. That is when I started feeling sick; I was so nervous. After a short wait we were called in, and the nurses gave both of us warm blankets (because that whole area is as cold as a meat locker). Sahara assumed her position on the table, and I took the chair. After they got the MRI started, and I was all warm in my blanket, I fell sound asleep, sitting up, right there in the room beside her. I have no idea how I slept like that...must have been sheer exhaustion. MRI's are NOT quiet...that machinery is very loud. LOL. An hour later, it was over, and Sahara and the radiologist were giggling about how I'd napped through the whole thing. :)

We had a break after that, so we had a quick lunch before seeing Dr. Wolff. He ended up being late because of some type of emergency, so it was nearly 2 pm before we were called back. He gave Sahara the biggest hug, and she was so glad to see him, too. It was comforting to see his face again. He spent nearly an hour and a half with us, going over everything, showing us her bloodwork for today (counts are starting to come up, thank God),reviewing what had been happening over the last two weeks, and finally, the results of the MRI. I held my breath as he brought the images up on his computer screen. None of it made much sense, until he brought up the first MRI image, then placed today's image beside it. The difference was striking. It appears that the front of the tumor has indeed begun to shrink; it is visibly changed from the first image. This is VERY good news. The tumor has some other changes showing as well, which are not as clear. There are some white areas that were not there before, but they could be necrotic tissue left as a result of the radiation treatments killing the cells. Worst case scenario, there could be some growth behind those white areas, but it isn't possible to tell right now. He wants to do another MRI on December 1st, to investigate it further. But for right now, we can breathe. I asked him, point blank, if we can consider today's visit to be a good one - and he said yes. :) So, that is a relief, and we can go back home with smiles on our faces!

We have so far to go, and will begin the next steps of the journey next week when outpatient chemo begins in Cape. This trip to Houston was such a hurdle, and it was emotionally draining for all of us. You just have to keep on praying, every single day, and that is what we will continue to do.

Dr. Wolff presented Sahara with a large, framed, signed certificate today, congratulating her on making it through her treatments at MD Anderson with such flying colors. You could just feel how proud he is of her...and his entire staff had signed it. Above his signature were the words: "You are my inspiration." He told her that he has hung her letter to him over his desk, and whenever he feels discouraged, he reads it, and it helps to keep him going. It was such a touching moment, but Sahara demanded that I not cry, so I was a big girl and held it together. LOL.

Thank you all for continuing to keep her in your thoughts and prayers. I know that it is helping Sahara to make progress in this battle. God is bigger than any of this, and every single day I tell myself that he doesn't put any doors in front of us that we cannot walk through.

We are looking so forward to coming back home tomorrow! This has been a fast trip, but adding the change to Daylight Savings Time did NOT help. LOL.

Take care everyone - we love you!

Amy

country roads

Amy and Sahara headed off to Nashville today--for a bit of good shopping. Tomorrow morning, they'll fly to Houston, stop by MD Anderson to charm the infamous Dr. Wolff on Monday, and if all goes as planned, they'll fly to St. Louis on Tuesday.

The Show Me Center reports ticket sales are strong for the Rick Springfield benefit show. Check it out at www.showmecenter.biz. I'll be there--my second time to see Rick, and my first time in Missouri. I don't know who I'm more excited about meeting--Amy, Sahara, or Gramma Dooley. It should be a fun weekend.

Sahara's still not feeling great--but maybe a couple days of Texas sunshine will be just what she needs. Home's always the best medicine--but adjusting to blustery winds when you've been basking in the warm weather can take some time.

If you've emailed me over the past week, please be patient--I'm catching up on my replies this weekend. Amy appreciates all the support--and says KEEP PRAYING. So get on it, people.

You give me fever

Hello, faithful Sahara fans,

Well, things are going absolutely crazy around here. News of the Rickshow is spreading far and wide. I hope as many of you as possible are able to attend! Sahara is so excited she can't hardly stand it. We are going to have a blast! I know people from coast to coast who are planning to make the trip, and we are so honored to have them here. There are some really cool things to do in Cape during the holiday season, which will be in full swing when Rick comes to town!

Sahara has been feeling quite crappy the last few days. I think all of the excitement and activity, combined with our freaky cold weather, kinda took their collective toll on her. She is doing much, MUCH better tonight and seems to actually have an appetite (gasp) again. We are so relieved. When Sahara is sick, and QUIET, I absolutely hate that silence. When she goes back to being sassy, silly and her laughter fills the house, I know things are going to be all right. :)

Take care and have a great day!

Love,
Amy

Souper Sunday

Happy Sunday... there's pea soup on the stove (first of the season!) and roses in full bloom, 10 days before November. Mother Nature seems confused. But I'll take it.

I haven't been lucky enough to see the CNN story on Rick's benefit for Sahara. Did anyone tape it? If someone records it digitally and loads it on Youtube or Google videos, I'll add the link--or if anyone sees the story on CNN.com, let me know.

For those of you just joining us, welcome. I'm pamela, a writer from NY who helps Sahara and her mom Amy, tell their story. Sahara writes in orange, Amy writes in green, and I write in black. Shannon is Amy's husband and Sahara's dad, and he has yet to blog. Must be a chick thing.

Hello, everybody!

So, it's official, Rick is coming to Cape Girardeau!! We are so honored that he is doing a show here for Sahara. She's bouncing off the walls, because she has always wanted him to play the Show Me Center. It is going to be such a great time! Rick and his management apparently have a lot of goodies in the works, and it sounds like we are going to have one heck of a party. If you haven't seen a Rick show before, then you are in for a treat. If you are a veteran like we are, you already know what a blast you will have. Come on out to Cape on December 8th - we will do our best to show you a fantastic time in our town! (I really think we need to get Gramma Dooley up on stage, don't y'all? SHE ROCKS!!!)

Sahara has had a very nice, relaxing week, getting stronger each day. That last round of chemo was a tough one, but she is recovering well. Her blood counts still looked good when she got checked on Monday. It is so wonderful to be able to get her lab work done at St. Francis, and to see those MD Anderson logos on the walls showing that they are affiliated. What a blessing to be able to get this done at home!

She's spent most of her time resting, playing with her cats and dog, and catching up on some movies. Tonight, her girlfriend Madison is sleeping over. I made chocolate chip cookies, and they are in the basement snacking, watching tv, and laughing. It sounds so good to hear them having fun!

It was a gorgeous day here - bright sun, a million colors in the trees, the sights and sounds of a great fall weekend. I love this time of year. I'll say it one more time...there is NO place like home!!!

Have a blessed Sunday and enjoy some good times with your family!

Love,
Amy

Why can't I find a woman like that?

Our media darling is doing well, thank you. Oh, she's tired, but given her social schedule and frequent news appearances, is that any wonder? She is so happy to be home--among friends she knows and those she hasn't met yet.

I am sporting a cool new orange swirl bracelet, thanks to Gramma Dooley, whose rules sound fine to me. But then again, anyone who offers "anything you want" for breakfast, especially when I'm ravenous, goes right to the top of my list.

Now, some of you have heard the rumors--and the local paper broke the story earlier this week. Here's the official information, straight from the Show Me Center:

Rick Springfield will come to Cape Girardeau to perform a concert on Friday, Dec. 8, 2006. The show will start at 8:00 pm at the Show Me Center.

Many activities are being planned for the occasion. There will be a limited number of VIP tickets available. These tickets will include a pre-show reception with Rick Springfield, a photo and autograph opportunity, hors d'oeuvres, and opportunities to bid on donated auction items.

Rick Springfield is donating his time and talent fee. The Show Me Center is donating the facility, rental fees and staff time. All net ticket revenue after staffing, production and transportation costs will be donated to "Help For Hoops" to help defray medical expenses.

Tickets are expected to go on sale, Friday, October 27 at normal Show Me Center and Ticketmaster outlets. Ticket prices are $35 & $25.

That's what I know. That's what Amy knows. To answer the questions:

1. I cannot get you backstage passes.
2. I cannot get you into Rick's hotel room.
3. Thank you, but no, he won't need to stay at your house.
4. No, I can't get you tickets before the official sale starts.
5. Yes, I'm sure he'll sing Jessie's Girl.
6. No, you cannot touch his tushie.
7. No, even if you donate a million dollars.

I could have danced all night

Hello, everyone!!!

There are not enough adjectives in the English language to describe how wonderful our homecoming weekend has been. Our friends, our family, our community...what an amazing outpouring of love for our family. We are so grateful and humbled by all we have experienced - and Sahara loved every minute of it!

Saturday night was the "Love2Sahara" benefit at the Elks lodge. WOW! From the moment we arrived, we knew it was going to be a great night. We were met in the parking lot by the Southeast Lady Redhawks basketball team! Sahara's mouth just fell open when she saw them and Coach BJ and Coach Pace waiting for her. They are the most phenomenal group of people, and we cannot wait for the season to start!! Thanks for coming to share this night with us!

The parking lot was jammed with cars; I knew the place was going to be packed. When we walked in, it took my breath away. The decorations, the food, the people...it was absolutely beautiful! Sahara was in for a long night, and she was more than ready to see all of her friends and everyone who came out to support her.

Eternal gratitude to Alison Morningstar, Bill and Angie Tegel, St. Francis Hospital, O'Charley's, the Elks, my coworkers from Southeast Missouri State, ALL of the donors of the fantastic auction items...you just wouldn't believe the amount of things we had up for bids. We had TONS of food - thank you Tom and Julia! You all put on one heck of a party and we had so much fun! Sahara really did dance all night, finally tiring out about 11:30. She had the greatest time! Thanks to EVERYONE who attended, worked so hard to make it happen, bid on the items, and shared the night with us. We will never forget you all.

I really thought Gramma Dooley was going to bid 'til the end for that Rick Springfield signed guitar...LOL...she really had a gleam in her eye!!! If you haven't met Frances Dooley, then you are missing out, because she is one of the most energetic, driven, spiritually-powered women I've ever met. Can you believe it...she's sold 2000 bracelets, and with her winnings from the 50/50 drawing, she's ordering more! How in the world did we get so blessed as to have people like this come into our lives????? WOW!!!

Somehow we were on time for church this morning...that was tough! LOL. Sahara received a standing ovation from the congregation (hey, I rhymed), and was grinning from ear to ear. We have such a great and faithful church family, and we are so lucky to have each and every member praying for Sahara's recovery.

This afternoon was the "Hope for Hoops" benefit at Capaha Park. Let me tell you, it was TOUGH finding a parking place! It was a perfect fall day...nice and cool, and I really enjoyed the clouds. It was great sweatshirt weather, and a super day to be at the park. The bands were fantastic! If you're in our area, be sure to check them out...The Mike Renick Band went on first, then The Intention. Both of them rocked the place. Sahara and all of her friends (tons of them!) ran onto the stage when The Intention played "Jessie's Girl." It was priceless. The turnout was unbelievable! We even made the local tv news tonight!

A million thanks to the wonderwomen who were in charge of today's festivities: Jennifer Hecht and Tracy Haggerty. I have no idea how they pulled this off. Both of them area teachers, with kids, working full time and raising their families, and somehow (just like the folks involved with Saturday night's benefit) they accomplished huge things. Special thanks to everyone who sold concessions and t-shirts, who volunteered and helped in any way, to Tina and Emily Hagan for selling the wildly popular items from their business, Little Helpers, to the bands, to everyone who came out to share it with us!

We live in the greatest community - I am so proud to be a resident of Cape. Our people, our teachers, our schools, our churches, our businesses...all have been so supportive of our family since our journey began in July. I want each and every person to know how much we appreciate the time and effort spent on our behalf. It truly helps to know that we have the prayers of literally thousands of people going up each day. And anyone who saw Sahara this weekend can attest to the fact that those prayers are WORKING! Thank you for giving us the best "welcome home" that a family could ever receive.

WE LOVE YOU!

Amy, Shannon and Sahara :)

Kibbles and bits

They're home. I'm well. Life is grand. Salad is back on the produce shelves. I missed it. I think I ate salad, joyfully, every night this week.

Some snippets from Amy's latest email. She'll update the blog when she has a free moment--but since this is homecoming weekend and benefit weekend, too, there may not be many free moments. And that, my friends, is what I call a blessing.

Made it home safe and sound, and it feels soooo good. Some friends and family decorated our yard for Halloween, (including a scarecrow hanging off the basketball goal that screams, "GET AWAYYYYYY!"), pumpkins and witches and mums, there was a giant welcome home sign on the garage door, and Sahara's girlfriends must have some sort of radar, because they were here within 30 min. of us getting home. LOL. S was so excited that she forgot to put a hat on...I bet her bald head was the talk of the town tonight.

I hope that being home will help her to heal. She has her cats and dog again, and their medicine is already working to help her feel better. :)

It's really cold here - what a shock to the system. I think it's like 35 degrees outside, and we have the heat on in the house. And yesterday we were hot in Houston. LOL.

You can ring my bell

Well, Sahara rang the heck out of the bell in the radiation oncology department this morning! It's hard to believe that we are beginning to see a bit of closure, even though the road ahead of us is very long. I cried, took photos of her, and was very proud. She is such a precious girl.

She's been tired the last couple of days, mostly resting and napping. I bet she will perk up tomorrow, though. The chemo will end during the night, and she'll just be receiving hydration in her IV after that. So far, she has been very resilient and snaps back quickly after the chemo is finished. Plus, no radiation in the morning!

We will be flying home bright and early on Friday. I'm sure we will both be wiped out by the time we get home, but the thought of being HOME is what is keeping us so motivated!

Can't wait to see many of you at the benefits this weekend - we are going to have so much fun! Hopefully Sahara will feel like spending a good amount of time at both of them. And surely the weather will hold for Sunday!!! Keep that faith!!!

Special thanks to everyone involved with the benefits...we are simply astounded by your incredible efforts in making them happen. The blessings in our lives just keep multiplying every day. We love you all!!! Can't wait to see you!!!

With much love,
Amy

Homeward bound

Monday was just fine. Sahara was up at 7:30 am after sleeping fairly well Sunday night. She had radiation at 8:30, then we went back to our room. We talked, walked, watched tv (loved that Hannah Montana marathon), ate, and even played bingo tonight. She didn't even nap today!

She really enjoyed talking to some of her friends on the phone and IM today. (I miss you guys, too!)

I think she's done for the night...looks like she's sleeping soundly right now. She went to sleep very happy because...drumroll please...Dr. Wolff came in this evening and gave us the green light to come home on Friday!!! Her counts are holding up well, she's tolerating the chemo like a champ, and she's even gained weight. YEAH!!!!!

Last night she wrote Dr. Wolff a note, and she gave it to him this evening. She wrote it with her right hand (she couldn't even hold a pen when we arrived here on August 1). It said, "Thanks, Dr. Wolff, 4 giving me my life back. Love, Sahara." The look on his face was priceless.

I don't have flights booked yet for Friday, but that will be my task for Tuesday. I can almost smell the fall leaves in Cape Girardeau...and taste Diebold's apple cider...home has never sounded so GREAT!!!!

We're on our way, baby!!!

Kiss me, you fool

Since I'm playing catch-up for the weekend, here's Amy's Monday update. Happy Columbus Day!

Rhonda Hunt, a photographer from Arkansas, took these photos (and the Rickshot I just posted). Although how hard could it be--her subjects are all adorable.

The dogs are from PAWS, an animal rescue organization here in Houston. The big dog is Katie, who was very charming, and HUGE! The little chihuahua is Louie, who was equally charming, and very cute in his Harley t-shirt. LOL. Sahara had SO much fun playing with them. :)

Today is going smoothly; no sickness, thank God! She threw up once yesterday morning, but slept it off, apparently. She's been fine since yesterday afternoon. She's even gained weight in the last week. I was told today that she's the very first pediatric patient here that has gained weight during radiation. Wooo HOOO!!!

For all the girls I've loved before

Quit clicking refresh--we're back! J and I spent the weekend in Rhode Island, exploring Newport mostly, slurping chowdah, and staring out at the ocean, a glorious navy blue. It was a sunny, beautiful weekend. We ate an a wonderful little outdoor cafe on the wharf for lunch, then hit a clam shack for dinner that was so greasy, we felt coated when we left.

Drove home today and am feeling much better. I saw my doc again Saturday morning and finally got some meds to reduce the inflammation in my lungs, and that did the trick.

Of course, my weekend wasn't half as much fun as that of Amy and Sahara. Not that I'm supposed to talk about it! Let's just say that SOMEBODY was a princess for the weekend, and somebody else in this photo was a perfect prince.


The last few days have been a flurry of activity! We have had so much fun, it seemed for a bit as if we were on a Ricktrip just hanging out and doing our normal stuff.


Rick got to town on Thursday afternoon. He and the entire band came to the RMDH. I was so completely impressed that they all came with him. They visited with the kids and their parents for about an hour. We had the best time. It was such a great day.

Friday morning, got up and ran back to MD Anderson to get her radiation treatment, then went to soundcheck a little later, where we met several of the incredible fans that have been so kind to us. Everyone was very cool and genuinely sweet.

Got ready to go to the show after that. Sahara looked SO cute, in her surfer clothes and a sparkly white beanie. She and Aaron ended up on stage. (They brought a van full of kids and several adults from the RMDH to the show.) Rick smashed a guitar at one point, and gave the remains to Aaron, who was completely in awe of the whole thing. It was PRECIOUS to see the look on his little face!!! The show was fantastic as always, and everyone had a wonderful time.

Sahara stayed up late both nights and never even acted tired. She never ceases to amaze me. She was just so HAPPY. It was great. We said goodbye to the guys this morning--she cried and cried when they left. They are such a cool group of guys and we love them all.

Finally got her into a room at the hospital about 3 this afternoon. She's been on hydration ever since, and they will start the chemo at 3 am. I hope this round goes smoothly. As long as they keep the Zofran dripping, she should be okay.

She gained three pounds this week! I am so happy. All of that pizza is paying off. LOL. I brought some food with us, because she's so bored with hospital food. Since we arrived, she has eaten four (yes, four) PB & J sandwiches, and four containers of milk. Amazing. Sometimes she eats like a piglet. LOL.

Tonight we've just been watching tv (what a treat to have tv in the room). She dozed off about 9, and has been sleeping soundly ever since. I hope she sleeps through the chemo setup.

So, for now, we will be sitting in the room and waiting for it to be over. Just a few more days!!! Hope you have a great week...keep us in your prayers!

Love,
Amy

Pamalamadingdong

Sahara's kicking her tumor's lumpy butt, but I feel like celebrating, too. I can breathe through my nose again! I actually slept last night, from 12:30 to 6:30. I couldn't stop grinning at work today. I'm not 100% yet, but I feel so much better.

Amy mentioned we may be quiet for a few days; not to worry. J and I are zipping up to New England for the long weekend, unless I have a bad night. At any rate, she and Sahara will probably be too excited to float down to earth and blog, after tonight's Rickshow.

I updated the Help for Hoops page today, so if you're looking for new options, take a peek. And if you're waiting for bracelets from Gramma Dooley, she's out in the street waiting for the UPS truck to deliver the second batch.

The countdown

Hi, everyone!

It's been a really quiet week around here. Sahara's doing fine - no sickness (woo hoo!), just dealing with some fatigue from the radiation, but otherwise doing so well. Today we started packing up some things in our room. What a great feeling that was! I normally hate packing, but knowing that we are getting closer and closer to going home makes it almost fun. LOL.

We are looking forward to seeing Rick on Friday night. He's playing less than half an hour away from where we are staying! It's all Sahara's been talking about for days. I'm sure she will find the energy to enjoy it and have a blast. :)

Saturday morning she gets admitted to the hospital for her last big round of chemo...five days of it. We are hoping and praying that it goes smoothly, and that her counts stay good - so we can finally go home. Not sure exactly when that will be, and I don't have flights booked yet. Things can change so quickly. But we are going to do our very best to be home to make at least an appearance at the benefits. We just can't hardly wait!!!

My posts might be sporadic the next few days. We are going to be really busy, and our dear blogmistress will be taking a much-deserved vacation. She burns the candle at both ends 24/7 - another woman who really needs her own cape, like Gramma Dooley. LOL.

But rest assured, things are going well here, and we continue to pray that Sahara is going to beat this thing. She is certainly moving in the right direction with the passing of every day! God is GREAT!

Take care!

Love,
Amy

Great expectations

Greetings from Plagueville. I finished my antibiotics Sunday night, but those six Japanese men living in my chest and humming in dissonant harmony apparently have settled in for the long haul. I went back to my doctor today, who heard them and laughed, which made me laugh, which made them wheeze and hum louder.

At any rate, it was good to laugh, and it was good to see him. Like Sahara's Dr. Wolff, I am blessed with a doctor who actually cares, who actually listens, and is, by all accounts, a human being. Best of all, he lets me be a human being.

Which isn't always easy in this world. As women, we're expected to bear it all, keep a graceful attitude, and put others above ourselves at all costs. And that, my friends, isn't always a good thing. That's not to add an air of doom and gloom to the blog, but rather to simply say that all of us can think, say, and feel things that aren't perfect.

Unless you're wearing another person's shoes, you can't begin to know what's driving his or her moods and outbursts. Think of the sunniest woman you know. Odds are, even she cracks sometimes. And if she's you, climb down off the silly pedestal. Let yourself eat too much chocolate cake. Say what you mean. Forgive yourself.

You're only human.

Skip to my Lou

Our final Monday of outpatient chemo in Houston is finished. Sahara made it through just fine, just a bit more tired and subdued today. We seem to have the anti-nausea medication sequence down pat. So far, no sickness! Thank God!

Today I watched in amazement during her visit with Dr. Wolff. She can now move both of her eyes all the way to the right!!! Where there had been zero movement before, she can now move them! Still can't do that to the left yet, but what a miracle. We are definitely moving in the right direction.

She was in rare form, too, absolutely leaving Dr. Wolff speechless and cracking up, when he turned around and saw that she was wearing some Billy Bob teeth. LOLOL. He'd never seen those before and got a huge kick out of them. And yes, I took pictures. Tee hee. He really loves Sahara...I've never seen a doctor with so much interest, compassion and pure hope for his patients. Wow.

This afternoon she did something I hadn't seen in so long I can't remember - she skipped. All the way down the hall at the RMDH. I was speechless. Her coordination is improving each and every day.

We're beating this thing - one day at a time! God is truly good.

Take care!

Love,
Amy

A vitamin sea of orange

I'm still coughing up little green men. Whole armies of them. But I'm holding on. If I cough up an orange bracelet, then I'll officially be scared.

Yes, I know there are some new benefits to post, and I'll get them up one evening this week. But for now, I've got a date with a big red Nyquil bottle.

It's been such a nice, low-key day, that it's almost too boring to post anything! We slept in until about 9 am, had breakfast, and hung out at the house for a while. Sahara started getting hungry again about noon, so we ventured out into town. We went to the Saltgrass Steakhouse and had a great meal...I can't wait until she gets weighed tomorrow, because she has been eating so well. Surely she will have gained a couple of pounds! I hope so. We walked through a couple of shops in the adjacent plaza, then headed back to our temporary home.

Sahara's been hanging out with some really great kids here. They have a nice gameroom with a pool table, video games, a big screen tv, a jukebox...lots of fun things to do. There's usually always someone to play with. :)

Back to the hospital for radiation and chemo bright and early in the morning. Mondays are the toughest days, because it's non-stop until about 1 pm. I'm sure she'll be tired

We are really getting excited about the benefits, and we just can't hardly wait to get home. I'm looking forward to seeing the sea of orange!!! Yeah!!!!!!

Have a great week, everyone!

Love,
Amy

You're a butterfly

Hi, everyone!

We had a downright-near perfect day today...sunshine, not too hot, shopping, Chinese food...ahhhhhhh. Sahara and I had an absolutely WONDERFUL time. I rented a car (sweet freedom!), and we made our way to the Galleria, Houston's shopping Mecca. It was crowded, crazy, and pure fun.

We shopped for about an hour, then Sahara said she'd really like some chicken teriyaki. Found a little place to eat called the Magic Wok (although I saw no magic OR wok), which had very tasty food and huge portions. We were both glad we stopped there. Afterward we went to the arcade and spent a few bucks on games, which yielded enough tickets for some candy at the redemption counter. Woo hoo. She had a blast, though, so it was definitely worth it! Shopped a while longer, found a couple of cute items, then headed back to the RMDH. We had so much fun, just hanging out like we used to do on any given Saturday. Sahara looked SO great today - she has truly bounced back in a way I can't even believe myself. She gets so many compliments on the cute beanies she wears, and I know that helps her feel better about herself. I can honestly say this day was FUN...I never thought we'd have such an enjoyable day here. YEAH!!!

Spent the rest of the afternoon and evening snacking and chatting with some of our sweet friends from here at the house. We are really going to miss some of these folks. And bless them, some will be here for 2 years or longer. Keep them in your prayers - this house is full of people who are struggling with realities that are very harsh.

Gramma Dooley - we really must get you a cape, because you are obviously Superwoman, posing as a mild-mannered government teacher. LOL. We love and appreciate you! And that goes for everyone else who is praying, thinking about, and working for this wonderful girl of ours. THANK YOU!!!

I hope you all have a blessed Sunday, and that you will worship as you please, spend time with your families, and keep praying for our miracle.

With love,
Amy

Glue and goo

Now, there's no need to call out the troops. I am not dead; I've simply decided to become a glue factory. At least that is what it feels like. I don't get sick (other than having an angry tummy that is way too sensitive) so when I get a lung bug, I collapse in a heap.

I stayed home from work today, lolling about, eating homemade chicken soup and drinking blackberry sage tea. I even tried to buck myself up by saying that my birthday twin in Houston would handle this with far more sass.

But truth is, it feels better to moan and groan. Has anyone seen my lip balm?

Hi, everyone,

Another quiet day...Sahara went to radiation, but we opted out of occupational and physical therapy this morning. She wanted to get her required hours in class, so she went to school today. She's felt much better, and not so tired, which has been nice. :)

After school, we caught the van to a little shopping center near here.
Sahara and I enjoyed a bit of retail therapy there, and found her a cute new outfit and shoes. Nothing feels better than a successful clothing purchase!!!

Today is our 22nd anniversary - first time we've ever been apart on this day. 732 miles, to be exact. Hard to believe it's been that many years. Happy Anniversary, Shannon! We love you!!!

Gotta run, the line is growing to use the computer. Since the kids can't play outside due to the thunderstorm we're having at the moment, the computer becomes the most popular spot in the house!

Have a great weekend, everyone! And send Pamela some good vibes, because she's the hardest working woman in the writing business, and she feels like crap this week.

Love,
Amy

Hi, everyone!

Not much to report these last couple of days. Sahara's doing fine, just very tired and sleepy, so she's been taking a lot of naps. She's still eating well, and doing great in therapy each day. By the time she's finished with physical therapy, though, she is so worn out that she just needs to nap for a while. Hopefully this weekend she'll perk up again.

There are some cool things going on this weekend that are not too far from the RMDH, so I hope that we are able to venture out for a while. The Houston Zoo is just a few blocks away (a mere 5 minutes by bus, which stops right in front of the house), and there's music at a pavilion close to the zoo as well.

To everyone who is planning on attending the benefits, thank you!!! You will be amazed at some of the things that Shannon's told me about that will be included in the silent auction!!! I hope we can get a list posted soon, because it's just blowing my mind. I know of some really cool stuff...like a Joe Montana autographed football, a Michael Jordan autographed basketball...some signed basketballs from the University of Kentucky; I think this auction will have something for every type of sports fan!!! And so many other things I can't think of them all!!! We'll be working on that list, I'm sure, so stay tuned!

Today while Sahara was sleeping, I watched as three of my favorite boys were playing outside. They were running, laughing, and playing as hard as any grade school boys on any playground. The difference is the fact that two of them have had liver transplants and one has leukemia. You'd never guess it by looking at them, though! Miracles are happening around here every day. On Monday, a little boy received the double lung transplant he and his family had been desperately waiting for...out of such sadness for one family came pure joy and hope for another. Around here, you really learn about "the circle of life."

Keep praying, please, for our family, and for all of the other families who are struggling with childhood diseases.

Take care, and we can't wait to see all of you soon!

With love,
Amy

Plague edition, 2006

Amy and Sahara are being awfully quiet, which makes me think they're either out powershopping for the homecoming, or Sahara has stomped all Amy's typing fingers on the basketball court.

Yesterday I got slammed with a respiratory flu that hit so hard and fast, it actually scared me. I had a doctor's appointment anyway, so I made it a double. My chest is wheezing in chords. It sounds like beavers singing. But I can't quite place the tune.

Anyway, go wash your hands with soap and hot water. No sense in catching the flu blog.

The runaround

We had a good day again today, although Sahara was WORN OUT after occupational and physical therapy!!! They ran her ragged. LOL. Her strength is amazing (all of the therapists say so), she just has to get her coordination back. Each time she goes to therapy, she does better than the last.

She had intended on going to school for a while today, but was too tired. Hopefully tomorrow she'll be up to it again. By the way, teachers, she's making A's and B's, which I think is so cool!

Tonight the women's basketball team from Rice University is visiting the RMDH. I'm sure Sahara will enjoy seeing them. Although, I know she'd rather see the Lady Redhawks walking through the door!!!!! Come on, basketball season!

Hope everybody has a great evening. Take care!

Love,
Amy