Sahara Aldridge

Time to say goodbye

2008-12-31T08:11:00.005-06:00

Amy:

I continue to look in the mirror and wonder, “what the hell happened?” As I sit here on the first day of 2009, trying to pull words out of the air, I know that turning Sahara’s blog into a permanent memorial is the right thing to do.

However, it’s also difficult to close the book when you’re still searching for answers. Sahara loved the messages sent to her via the blog…they made her smile on so many rough days. I’m eternally grateful for all of you who were so faithful to our family as we faced the unthinkable…before, during and afterward.

As a Cancer Mom, you find yourself constantly searching and reading about the journeys of other families fighting the same battles. You rarely meet the people, but feel as if you know them, as you keep up with the raw, honest, often daily entries they make in their blog journals. You laugh at the funny times; you ache with them during the awful times. You hang your head and sob when their children are lost. You get so angry and hurt so badly for them… because until some serious major medical breakthroughs are made, you know how the stories will end.

I’ve come to realize that we Cancer Moms are in one tough sorority. I found the following on Gunner Gillespie’s site (we CM’s pull and post a lot of information from each others’ sites). It was helpful to me and I wanted to pass it along to you.

THE CHOSEN MOTHERS
By Erma Bombeck

Most women become mothers by accident, some by choice, a
few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As HE observes, He instructs His angels to make notes in a giant ledger....

"Armstrong, Beth, son, patron saint Matthew, Forrest, Marjorie, daughter, patron saint Cecilia, Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

But does she have patience?" asked the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has its own
world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she believes in you."

“No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see....ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she was here by My side.”

"And what about her patron Saint?" asked the angel, his pen poised in mid-air.

God smiled. "A mirror will suffice."

As a Cancer Dad, you’re often on the sidelines. You’re keeping the home fires burning, working yourself to death and trying to keep your head on straight as you spend so much time alone. Normal family life becomes a distant memory, as in so many cases (including our own) the Cancer Mom must take the child far away for treatment, for great lengths of time. Unless you’ve lived it, you cannot fathom how difficult it is to work all day, then go home and receive the nightly phone calls that often bring lousy news…MRI reports, bad reactions to medications, sickness, mouth sores, weight loss, hair loss…but, if you’re really lucky, you might hear about something funny that she said or did that day that made everyone howl with laughter. We were fortunate that Sahara was blessed with a riotous sense of humor and often did make those doctors and nurses laugh. Cancer Dads, the world should salute you. I know I do.

I envision this web page becoming a virtual “curio cabinet,” where I can stash memories, photos and maybe even the occasional announcement if anything of real interest or value is happening. Come back and visit from time to time.

We will continue to support the good works of MVTH and have some ideas for fundraising in the coming months. I also ask that you keep Pediatric Brain Tumor Research and Ronald McDonald House Charities at the top of your giving lists; they are so very, very worthwhile. One of my goals is to support the research of Dr. Michael Edwards and his staff at Lucile Packard Children’s Hospital at Stanford. They are working so hard to find the answers we need. I pray that within my lifetime a cure will be found for the horrific cancers that take the lives of so many precious children.

I really don’t like goodbyes, so let’s just say “so long for now.” Thank you for honoring our sweet Sahara with your presence here on the blog and in the million other ways you’ve supported us. Please remember how funny she was…remember her smile, her beauty, and her love for her family, her friends, and LIFE.

Shannon:

Until the world stops turning
Until the wind doesn’t blow
Until the sun stops shining
Until the river doesn’t flow
Until my heart stops beating
Forevermore
The legend lives on
Remember the name
Sahara “Hoops”, 21

With much love,
Amy and Shannon

pamela:

Almost 14 months ago, after a long day of celebrating Sahara's life surrounded by her family, her friends, her church community, by Rick, Packy, Matty and Ronnie and her collection of animals, Shannon, Amy and I took a deep breath and had a quiet conversation about how and when to end this site.

I told them we'd know when it was right. So when Amy came to me earlier this month and said "I'm tired of living in a fishbowl," it was clear. This morning we took some first steps to turning this living tribute to beautiful Sahara into a permanent memorial. The thing is, no one ever forgets. But at some point, a headstone is carved, and that's it.

This finality bothers me immensely, especially because we're forced to connect it with such an amazing child. Her life was bold and vibrant, played out at full speed, top volume, heart pounding enthusiasm. It was her truth from day one. She knew what she wanted and what she didn't. She was astutely aware of herself, and her place in the world, and unlike most adults, she was entirely comfortable there.

There are thousands of Sahara stories here, capturing the last months of her life on earth--and the first year of the rest of us learning to live in a world that still doesn't quite make sense.

But this blog is not about us...from the very first day, it was meant to be about our darling Sahara, about her fight and her journey and the miracle she would undoubtedly pull from her pocket.

As proud as we can be for all the miracles she accomplished, for all she inspired and still inspires today, we all know the story itself has ended.

For more than two years, you readers have surrounded us with a blanket of support and love and hope that has brought warmth and comfort on the darkest nights and joyful laughter on the days we needed it most. Thank you for that. It meant the world. We started the blog to keep you informed--and discovered that instead, you kept us sustained.

Letting go of that is hard, but it's the path out of the woods. And so, on this cold, snowy morning, we are taking those first steps, our breath forming white clouds in the air, our cheeks pink with anticipation for what lies ahead.

With love and heartfelt gratitude,
pamela

Merry Christmas

2008-12-22T11:54:00.002-06:00

I hope this finds our dear readers well, happy and enjoying the holiday season. It's all a bit much anymore and it's sad that we're assaulted by Christmas trees and carols beginning in SEPTEMBER, but such is our world. Our economy is in shambles and still we see people fighting in the stores. It's just crazy. He who has the most toys doesn't necessarily win. Sigh.

Shannon and I will be on the beach on Christmas day. We're off to Mexico for a few days in the sun and it can't get here soon enough for me. When I left the house this morning, the temp was 8 degrees. I was not meant to live in a climate that reaches 8 degrees. UGH!!! Thank God for warm locales and soft sand beaches. Feliz Navidad!

Over the last few weeks I have been thinking about how to do something that will be difficult. It will mean removing a constant from my life, something that has been with me since July, 2006. Sahara's blog has been such a blessing...originally set up by my dear friend, Pamela, to help us stay in contact with our friends and family as we set out on a journey we wished we did not have to travel. It has served its purpose a million times over and I don't know what I would have done without it. It has provided contact, support, love and self-therapy. It has brought people together from around the world. And it made Sahara's fight very personal to everyone who kept up with it as part of their daily routine. It's just time to put it to rest and begin putting our once-private lives back in order as best we can. We thank you from the bottom of our hearts for everything you have contributed to our family. There are not enough words to express the depth of our gratitude.

All we can ask now is that you help keep her memory alive by sharing your great stories about her with each other, that you will support pediatric brain tumor awareness and research, and, if you can, keep supporting MVTH in their mission to help disabled riders enjoy some freedom.

I'm working with Pamela on a final memorial page that will be posted sometime before the end of the year. We hope it will honor Sahara's memory forever.

Thank you all...

With love,
Amy and Shannon

Vegas Rewind

2008-12-05T09:40:00.010-06:00

Hello everyone,

I hope you all had a nice Thanksgiving. We spent a quiet day at home, eating and watching the Titans crush the Lions. :) Holidays will never be as joyous as they were when Sahara was with us, but she's always there in spirit.

I need to back up and post a bit about our trip to Vegas in October. We had so much going on that I simply got sidetracked and forgot to say anymore about it. We had a very nice anniversary vacation. It was sunny and hot, just the way I love it!!!

We stayed at Planet Hollywood, which is now one of my favorite hotels. It was wonderful from beginning to end. While we were there, I took Shannon to as many places as I could, trying to hit all of the spots that Sahara loved so much...the Krispy Kreme factory at Excalibur, the walkways of New York, New York, the MGM, with the lions and Wolfgang Puck's, M&M's World, Caesar's Palace and the Forum Shops, Treasure Island and the pirate show, Hamada, the Fashion Show Mall, and just some good long walks on the strip. I love Vegas. I feel good when I'm there. So many good memories, good friends, good food and good times.

We enjoyed spending time with my dear friend Packy and her boyfriend Gregg, and her sweet mom even joined us for breakfast one day! It was so great to visit with them and we had some wonderful times. We were also able to take in a couple of shows, "KA" at MGM and "O" at the Bellagio. They were both great and I highly recommend that you see them if you get the chance! And if you want to see the most beautiful flowers and holiday decorations, the Bellagio is the place to be. It defies description. Just go!

On our last night, Shannon surprised me with a lovely necklace that he'd had custom made for our 24th anniversary. It is beautiful and so special to me. (if you ever need something spectacular for a special occasion, talk to Peg at Edward Bernard Gallery in Cape!)

Unfortunately, time always passes too quickly when you're in Vegas. Our three days went by in a flash, then it was time to fly back and get back to work on the benefit concert!

Our next goal: to be someplace warm for Christmas!

Love to all of you,
Amy

One Year Later

2008-11-04T14:57:00.004-06:00

The moments are winding down, ever closer to Wednesday, almost like a doomsday clock. How can I describe the first full year that passed without Sahara? Words like ‘hollow’ and ‘empty’ are fairly accurate, yet barely scratch the surface. After devoting over 13 years of our lives to her, making sure she was safe, healthy, self-confident and happy, to lose her to forces beyond our control remains the ultimate kick in the head. We still ask, “WHY?”

As I recall, November 5 used to be a fairly bland day, part of the anticlimactic post-Halloween period and far enough away from Thanksgiving to matter much. Now it’s known as the day Sahara died. Funny, that clear November Monday started out as such a good day, a productive day with no problems. Little did we know that it would also be the day that destroyed life as we knew it.

The niceties are worn, if well-meaning. “She’s in a better place.” Yeah, well, I still think that here with US was the best place. “She’s not suffering anymore.” Undoubtedly. “All of this happened for a reason.” That doesn’t help much. “You are so strong.” Oh, please. Sahara was the strong one…we were the ones who did what had to be done. We were parents, doing what parents do: we took care of our child to the best of our abilities. If anyone took away something good from our experience, we only have Sahara to thank.

There is no question in my mind that Sahara was sent here to be a teacher. For one thing, she always gravitated toward those folks who chose teaching as their life’s work. She followed teachers (and the occasional principal) like a puppy, shadowing them wherever they would go. She would never admit to being a teacher’s pet, and she really didn’t want to be…she just wanted to be part of their world. I’m sure she drove them crazy at times, because she never gave up on whatever “cause” she was trying to sell. Sahara loved her teachers and she loved going to school, more for the social opportunities than the educational value. I think every one of Sahara’s teachers, from preschool forward, can tell funny stories about her.

Admittedly, she wasn’t the most studious child; she hated homework with a passion and raced through her assignments at breakneck speed, with a devil-may-care attitude that would not quit. There was too much fun waiting to be had to spend a lot of time worrying about science and math. Her response to a report card riddled with C’s? “Well, at least I didn’t get D’s.” How do you argue with this kind of logic? She had an answer for everything, spinning on one foot and flouncing away before I could come up with an appropriate response. The worst arguments we had seemed to always involve schoolwork, but I could never stay mad at her for very long. It wasn’t possible!

What a teacher she became in the short span of only 13 years! She taught me what unconditional love really means. She taught me about the joy of being a mother and the pure happiness that comes at the end of the day with a goodnight kiss. When someone would hurt her feelings, she would tell me to remember, “Oh, mom, they don’t know any better.” She was so quick to forgive, a trait that I was most grateful for, as I felt I let her down so many times. I would get so frustrated when she was sick; frustrated with the medical system and the lack of options, frustrated with myself, even frustrated with her. June Cleaver, I am not. If I had a day when I was at my worst, somehow I always remembered to ask her to forgive me, and she always did. Then she would demand something from Sonic to make up for it. LOL. Her last Butterfinger Blast is STILL in the freezer. I don’t know if I will ever be able to throw it away.

She taught Shannon the joy of being a great dad, coach and friend. He always wore the same look of pride whenever she did anything, from hitting a three-pointer to calling her mother “such a nerd.” Daddy’s Girl??? OMG, yes, was she ever. She wrapped him around her little finger the first second he laid eyes on her – as it should be for every daughter.

She was SO many things…sweet, funny, goofy, kind, loyal, infuriating, silly, witty, clever, athletic, competitive, considerate…I could fill a “Sahara Dictionary” with words that describe her personality and spirit. I miss every single one of the things that made her who she was…a truly bright spark who touched lives around the globe. She was a girl whose zest for life and unquenchable love of adventure led to an incredible existence on this earth. Sahara could make someone, even one not particularly fond of kids, think, “Wow, if I could have one like her, I’d do it in a heartbeat.” She was a girl who collected friends and kept them close to her heart; friends who honor her today by remembering the good times they spent together.

A year later, we still have no idea what we are supposed to do with the rest of our lives. We go about our daily business in a routine, predictable way, so different than the way it used to be…because, with Sahara, you NEVER knew what was going to happen from one minute to the next. She taught us about spontaneity and getting the most out of every day. “Let’s shoot some hoops!” “Let’s go on a picnic.” “Let’s go to the mall.” “Let’s go to VEGAS!!!”

Has anyone noticed the explosion of orange in Cape Girardeau? The trees are changing rapidly, and everywhere I look I see vivid shades of the color that she loved. Seems like there’s more orange than ever this year, and it is truly the most beautiful fall I’ve ever seen. For me, it’s almost like a vast illustration for an Emily Dickens poem, such beauty tinged with such great pain.

There are good things happening. We are glad that we are able to help MVTH and will continue to do so at every opportunity. Upward Basketball evaluations begin next week, which means the season is right around the corner. I’m taking some classes and exploring different hobbies, trying to find a good fit. Even our silly dog, LuLu, is starting school soon. If she simply learns to walk on a leash it will be worth the cost of “tuition!”

We received the most wonderful letter this week from Tiffanne Ryan, one of the superstars of the Lady Redhawks Championship Team. (and YES, they will always be champs in our eyes…what a season…) She was one of Sahara’s all-time favorite players and she looked up to her so much. Thank you, Tiffanne, you made our day. Sahara was crazy about you.

It was our privilege to be her parents; to love her and teach her all we knew about life. Upon her birth, how could we have ever expected that she would do that and more…a zillion times more, for us? She taught so much to so many. What a blessing, what an honor, what a gift she was, to all who loved her, now and forever.

We love you, Sahara. We’ll see you on the other side.

Forever,

Mom and Dad

Prayers for Gunner

2008-10-23T12:38:00.002-05:00

Hello all,

I'd like to ask you to take a moment this afternoon to visit Gunner Gillespie's site at http://caringbridge.org/visit/gunnergillespie. If you could leave his family an encouraging word on the guestbook, I know it would be much appreciated.

I've told you about Gunner...he is a precious little boy in Benton, Kentucky who has bravely fought a brain tumor, one very similar to Sahara's, for just over a year. Today is not a good one and he and his family need your prayers. My heart aches for his parents, as I know all too well what they are feeling at this difficult, mind-numbing time.

Godspeed, sweet Gunner...

With love,
Amy

Afterglow

2008-10-12T16:48:00.007-05:00

Hello, everyone!

Sorry it took me a week to sign in and give you the total raised last weekend! I have been sick and finally gave up and went bed on Thursday evening, where I've been ever since. I missed the most beautiful weekend of fall, no doubt, because I haven't left the house. I'm starting to feel a bit better now, thank goodness. Anyway...

I was all ready to post that the grand total raised was $22,093. Isn't that simply out of this world??? But wait, I opened an email from Rhonda, photographer extraordinaire, which informed me that I should add another $28 from photo sales. It floored me to read the new total:

$22,121!!!!!!!!

Yes, Sahara had to throw in her contribution by making sure we had some 21's in the total. Two of 'em!!!!! WOW!!!!!

We began our Saturday at MVTH, where Rick and Matty got to meet the riders, their parents, and of course, the horses. It was "Rider Appreciation Day," but in my eyes, there was appreciation all around...appreciation for the kids, the parents, the staff and volunteers, and for Rick. Visiting MVTH is heartwarming, inspiring and breathtaking all at the same time. We had such a wonderful visit (with Rick and Shannon ending up in grass skirts...lolol). I am so glad that we had the opportunity to show Cowboy Rick what the program is about, how much Sahara enjoyed attending lessons there, and why we love MVTH so dearly. He got it. Everybody did. Rhonda worked her usual magic and took the most incredible photos. You can check out her photos from the entire day at rhondarenee8.smugmug.com/MVTH08.

I hope that many of you had the great fortune to meet Grayson, Sahara's instructor at MVTH, my benefit partner and all-around Energizer bunny. Could Sahara pick great people or what??? I continue to be amazed by the great choices she made in so many ways. Grayson epitomizes what MVTH is all about...love and concern for her riders. Sahara picked up on that immediately. Grayson and Kandy gave Sahara such joy and we are forever grateful. Now, we are blessed with friendship with Grayson and her wonderful husband Larry. I believe we all have Sahara to thank for that! We had so much fun putting the benefit together week by week over the summer. It's weird now that it is over...but we definitely have some ideas for fundraising projects in the future. I can't wait to work with them again!

The signing at PMac was great fun, with Shannon playing the part of Ronnie for the afternoon. (I thought he did a great job!) Thanks to everyone at PMac for all of their hard work, from ticket sales, putting up with hundreds upon hundreds of phone calls, and for hosting the signing. We appreciate all of you!

Rick was feeling rough but put on a great show as always. I don't know how he does it. I think it was purely his love for Sahara and her ever-present spirit that gave him the voice to sing that night, because he certainly didn't have much left! It was amazing. As he finished singing St. Sahara, barely making it through at all, the entire place stood up and applauded. I just stood there with tears running down my face...what a precious moment. To everyone who was there...our guests, our silent auction donors, our many volunteers, Sheryl and Don Henley, Crystal Britt, Mayor Jay Knudtson, Phil and the staff of Buckner's...thank you.

Our meet and greet was fun but Rick was fading fast. He managed to take photos with everyone but was definitely ready to hit the hay at the end of the evening. Thanks to everyone for your patience and respect for Rick as we tried to make things go quickly. And even more thanks to Rhonda for photographing the evening! I know that everyone is loving their photos.

As we drove the guys back to the airport on Sunday, we kept talking about how great the previous day had been. Rick and Matty truly had a great time and support our efforts more than ever. We thank them for giving us their time and talents as we continue to give it our all for MVTH.

If you were present for any part of our wonderful day, I hope you'll take a second to post your experiences. We hope you had as much fun as we did!

More photos to come as I slowly come back to life and get them uploaded. I'll also fill you in on our trip to Vegas for our 24th anniversary!

With love,
Amy

Let's Get this Party Started!

2008-10-02T11:07:00.006-05:00

Is everybody ready? This weekend is going to be a blast!

Details about Saturday:

Rick has graciously agreed to visit PMac Music from noon to 1 pm! He will only be signing items that are purchased at PMac, so get there early, pick up a cool Rick cd or dvd, and grab your place in line. Remember, he is only able to be there for one hour, so arrive as early as possible to make sure you get your chance to meet Rick! Doors open at PMac promptly at 9 am!

Enjoy the Show:

Parking:

Parking downtown can be, well, interesting. There are a lot of spaces on Water Street, behind Buckner's, as well as on Broadway and Main Streets. There is also a free parking lot behind the Convention and Visitor's Bureau, which is directly catty-corner to Buckner's on the opposite side of Broadway and Main. Get downtown early if you want a spot close to the club!

About Buckners:

Doors will open at Buckner's at 6:30 pm. We encourage everyone to get there early - have dinner, drinks, check out the silent auction items and get ready to have a great time. If you have standing room only tickets, please line up outside at the Broadway entrance as early as you can so you can claim the best spots when the doors open! Only the Broadway entrance will be open that evening.

Bring Identification that Proves Your Age. Even You, Gramma Dooley!

At the door, you WILL BE CARDED. Have your ID and your show ticket ready. After you're verified to be 21, you will be provided with an armband, which you must wear for the duration of the show, with colors corresponding to your tickets as follows:

VIP: orange, FLOOR: blue, BALCONY: yellow, STANDING ROOM ONLY: green

Once You're Inside Buckners:

An usher will show you to your seats or direct you to the designated standing room areas. VIP orange armbands will be required for entry to the Meet & Greet!

Event programs will be handed out as you arrive. You'll find some great information about MVTH, Sahara's story, and you'll be able to check out ads from all of our generous show sponsors.

PMac Music will have a booth set up on the left as you enter Buckner's. If you still need to pick up your copy of Venus in Overdrive or one of Rick's other great titles, this will be your chance!

Mississippi Valley Therapeutic Horsemanship will have an information booth set up directly across from the silent auction room. Please stop by, chat with the volunteers, take a brochure and find out what you can do to help after the night is over!

Silent Auction:

The silent auction will open at 6:30 pm. You may pay by cash or check (so long as it's good!). We have a fantastic selection of items waiting for your HIGH BIDS!

Gorgeous red Fernandez guitar autographed by Rick
Brown shirt Rick is wearing on the show poster and on the inside of the Venus in Overdrive cd
Handwritten lyrics to Jessie's Girl
Gift certificates to EDen Spa
I-Groove Digital Music Speaker System
GPS system
Free oil change cards from Bening Mazda
Cracker Barrel Gold Card
Super Stars of the 80's cd box set
"Rock of Life" clock
Beautiful selection of books
Rams/Bears tickets for November 23 (or Bears/Rams tickets if that sounds better...lol)
Vintage bottle of Scotch

Donations are still coming in! The silent auction will be located in the room directly to the left of the main bar. Bids will be accepted until 7:45 pm. At that time, the room will be closed and winners will be determined. Winners will be announced immediately following Rick's performance. The room will then reopen for winners to pay for their items. Best of luck to you!!!

Souvenirs:

Wait'll you see the t-shirts we have for sale! They will be $20 each and are a must-have souvenir to commemorate this very special occasion.

Raffle Tickets:

We will have volunteers conducting sales for a 50/50 drawing. The tickets will be $1.00 each, or 6 for $5.00.

Enjoy the Show:

You simply cannot miss the pre-show, which begins at 7:30 pm. We have some very special guests and great things planned for you to see. Be sure to be in your seats when we get started!

Rick will take the stage at 8 pm. How excited are YOU??? The show will last approximately one hour. Make Rick feel welcome as he comes back to Cape for the love of Sahara.

After Rick's performance, the great local band Midlife Crisis will take the stage. While they are setting up, our volunteers must move the tables and chairs from the VIP section back to their original places in the restaurant and Ragsdales (downstairs). Buckner's has been so very kind to allow us to configure their club to meet our needs for the show, and we've promised to put their chairs, tables and barstools back where they started! After the VIP section has been cleared, the floor seats must also be moved back to their original locations. We appreciate your patience as our volunteers put the place back in order. You are welcome (and encouraged!) to stick around and party with Midlife Crisis but your location will likely change due to seating restrictions. If you're in standing room sections, party on! We'll work around you. :)

VIP Meet & Greet (orange armbanded guests only)

The VIP Meet & Greet will be held on the third floor in the Riverview Room. After the silent auction winners are announced, VIP guests should line up on the stairs leading to the third floor. We will have ushers standing by for assistance. When the door is unlocked for the Meet & Greet, proceed as directed to the Riverview Room. Rhonda Hunt from Reflections Portrait Studio will be there taking professional photos of your meeting with Rick. She will provide a card with instructions for downloading your photo from the web. Each guest will be allowed one autograph and one photo. A cash bar will be open and snacks will be provided. Mix, mingle and enjoy this special once-in-a-lifetime experience! The Meet & Greet is scheduled to last for approximately one hour.

Do Not Drink and Drive. Now, or EVER!

We want everyone to have a great evening, and we also want everyone to get home safely. If you don't already have a designated driver in your party, you can make arrangements for a ride by calling Designated Driver at (573) 200-3388. They will pick you up and deliver you back to any location in Cape Girardeau. It's easy, inexpensive and a very smart choice! Please don't drink and drive!

Have a Great Evening and Let's Help A Great Cause

I think that's about it - all you have to do now is show up on Saturday and have a fantastic time with Rick! The weather is supposed to be picture-perfect; welcome to a beautiful autumn in Southeast Missouri!

We'll see you at the show!

Love,

Amy and Shannon

2008-09-18T09:09:00.020-05:00

How I Spent My Summer Vacation

Please, tell me I’m dreaming. It just cannot possibly be mid-September. The last three months have flown by at warp speed. One year ago last week, we took Sahara to Stanford for surgery. I still remember it all so vividly: the initial call from Dr. Edwards telling me that he could indeed operate, the difficult journey to Palo Alto, the amazing people we met there, a very successful surgery, big hopes from rehab, watching Sahara actually walk again in physical therapy, the excitement of going home. She only got to enjoy being at home for 11 days, but she was so very glad to be in her own house again.

I apologize for taking such a long time to post. It has been a busy summer with a lot of things going on in many different directions. I’ll try to do a respectable job of recapping my favorite season of the year. Sahara and I both loved summer; we were constantly on the run, traveling, swimming, zipping around from place to place, enjoying the warmth and beauty of the days.

Shannon and I delivered a check for $2150 to MVTH on Sahara’s birthday. I’ve included a photo of Shannon, Sahara’s Kandy, Grayson and me on the slideshow. I am so proud of the work he did and the number of shirts he sold. We again want to thank everyone who bought a shirt or donated to the cause. It was indeed a fitting tribute to Sahara’s memory to be at the barn on that day. She spent her last birthday there. It was a perfect summer afternoon, and she got to ride Kandy outside in the pasture near the barn. I was so proud of her for having the strength and desire to ride, even though it had become increasingly difficult for her. But as always, she was a champ, and had a great time on her special day. The volunteers at MVTH brought cupcakes to celebrate. I still have the little Hello Kitty decoration from Sahara’s cupcake in my kitchen windowsill.

Sahara’s birthday was a struggle for us in so many ways. We really didn’t know what to do with ourselves. After we delivered the check to MVTH, we literally drove around for about half an hour trying to decide where we should have dinner. We ended up having barbecue at The Branding Iron, one of Sahara’s favorite places. It was good, but somehow food just doesn’t taste right when you’re so freakin’ sad. I wonder which one of us cried the most that day; probably a tie for that honor.

The next day I left for New York. I flew to LaGuardia, where my precious friend Pamela picked me up in the Sparklecar! We had such a wonderful visit. I finally got to meet her husband, John, who is witty and a great conversationalist. She and I went to Rick’s show on Long Island, which was literally only about 20 minutes away from her home. It was so good to be at a concert again! I finally had the chance to meet Rosie, Theresa and several other wonderful gals who have followed our story for so long. (Thank you all for helping to make the trip so special for me!) Even though we were several rows apart, both Rosie and I noticed the lone butterfly fluttering around the venue before the show started. That butterfly dipped and dove for at least a couple of minutes before finally coming to rest right in the middle of the top of the rigging that held the lights. (Perhaps “she” had the best seat in the house. LOL.) Butterflies seem to float around in my world quite often, and I like to think that they’re little nudges from Sahara.

Pamela and I had long talks, great food and so much fun. I just loved the variety of restaurants on Long Island – wow! I think I had the best burger and fries of my life at a tiny little place called The Sweet Shop, in Hicksville. Thank you, Pamela, for chauffeuring me around the island and for making me feel so welcome in your home. I really needed that weekend.

I spent the next three days in the whirlwind commonly known as Manhattan. Thanks to my adopted locals who gave me such wonderful guided tours! We drove past Ground Zero on our way to the South Street Seaport; it was spitting rain, and the barricades prevented me from seeing the area, but just knowing what happened there seven years ago made me shudder. I simply cannot imagine having been in that area on 9/11. We all watched it unfold on tv, but driving past it I could not fathom how terrified everyone must have been, running in all directions, down chaotic city streets, screaming, crying, not knowing what was happening in their city. The Rick Springfield online community lost one of their own that day. Her name was Marni O’Dougherty. She was so vibrant and funny, and even though I had only spoken to her via typed words, my heart ached for such a loss. (I have a photo of Sahara standing in front of the New York New York hotel in Vegas, beside the photo of Marni and her husband that someone placed at their makeshift memorial. It’s one of the few photos in which Sahara looks genuinely sad.) Today, it’s hard to find many visible reminders of what happened on that awful day. I still remember all of the American flags flying afterward, and how this country banded together. I wish we could always have that kind of unity, no matter where you may stand politically. I can tell you this…the printed flag that Sahara taped to her bedroom door after 9/11 remains there to this day.

I walked through Times Square at night, which is the very best way to see it! The lights, the billboards, the Broadway shows…it defies sensory definition. What an amazing thing to see for myself. I spent just about every New Year’s Eve of my childhood with my grandma. We always had pizza and snacks as we celebrated with Dick Clark’s New Year’s Rockin’ Eve, and watched as the giant ball descended slowly to the ground. I never dreamed that I would actually stand beneath that ball one day. Now, THAT was cool.

Monday was insane! Up before daylight and off to Good Morning America to watch Rick and the guys perform. It was so much fun to be there and see how the show is produced. I loved seeing everyone having such a great time. After that, it was a day filled with running all over town, from one radio station to the next as Rick did interviews. We visited WPLJ, which I learned has a rich history in NYC. It was cool to see the station, and I met their star DJ, Race Taylor. He was very sweet and it was a pleasure to chat with him. We went to more places than I can remember that day! I think the last interviews were at Sirius Satellite Radio. Mark Goodman did a very good, very thorough interview for his Big 80’s show. I sat there as they talked, remembering how I used to see his face on MTV every day way back when. He showed great interest in “St. Sahara,” and when Rick introduced me as her mom, he got very emotional. (I think I made too many people cry in NY. I swear I didn’t mean to!!!) He was incredibly nice and I’m thrilled that I got to meet him. I also met Vinny Pastore from The Sopranos…how cool is that? It was such an exciting day, but I have to tell you that I literally passed out from exhaustion that evening!

Tuesday morning did not have quite as early of a start, thank goodness! We went to Live with Regis and Kelly for Rick’s performance. Honest opinion: Kelly is just as cute and sweet and funny when the cameras are not rolling. Seriously. Reege was very funny in his curmudgeonly way and seemed to have a good time working the crowd. It was great fun. After the show was finished, Rick had a lot more interviews to do. I wanted to do some sightseeing, so I took off and packed as much as I could into that day!

I still can’t believe I was able to get this photo. I was standing in line, waiting to get a ticket for the Circle Line cruise. It was very crowded, with lots of people mingling about the area. I glanced to one side and someone caught my eye. It was a man walking toward my line, obviously looking for something or someone. As he got closer, I noticed the type on the front of his shirt. The shirt was blue, and there was one word printed in block letters: SAHARA. I could not believe it…I tore my camera out of my purse and snapped a photo. He didn’t even notice. He apparently didn’t see what he was looking for, and as he came about ten feet from me, he turned around and disappeared into the masses. I would challenge anyone who would argue that Sahara was laughing, letting me know that she’s keeping an eye on me, telling me hello and giving me a wink every now and then!

The cruise out to the Statue of Liberty was both exhilarating and relaxing. It was truly awe-inspiring to approach her, imagining what the immigrants must have been thinking as they entered this country. It was a warm, sunny day, just perfect for seeing Manhattan from the water at a leisurely pace.

After the cruise, I walked…and walked…and walked. I scaled as much real estate (very, very pricy real estate, at that) as I could in one afternoon. Some of the highlights: St. Patrick’s Cathedral, Rockefeller Center, Central Park, the Plaza Hotel, FAO Schwarz and the NBC Studios. WHEW…

Following one last spectacular meal, it was time to pack my clothes, souvenirs and great memories. Wednesday morning came all too soon and I don’t think I really woke up until I got on the plane. I loved my visit to the city, but was also very glad to get back home. It was truly the trip of a lifetime and I am very grateful for the experience.

August 1st was Shannon’s birthday…it passed without much fanfare, I’m sorry to say, because I was up to my eyeballs in an office transition at work. Ask him about his Rocklahoma book, which turned out to be an excellent present, if I do say so myself!

On August 23rd, we did our very first 5K walk, sponsored by Lynwood Baptist. We walked with Jen and Dan Hecht on a really hot, muggy morning, and it was a great time. Apparently we didn’t take our stride seriously enough, because we were blown out of the water by just about everyone else in the race. LOL. No matter, it was fun and I’m glad we did it. Who knows, maybe it will become a new hobby!

A postscript to Sahara’s birthday: on the afternoon of July 24th, my nephew Darrin and his family took a bouquet of 14 balloons to Cape County Park and released them. Attached was a card that said happy 14th birthday to Sahara, gave her website address, and asked the finder to please let us know where the balloons landed. Well, a few days ago, a gentleman named Kevin from Melber, KY contacted Pamela. He found the balloons while hunting in Ballard County – then took the time to look up the blog and read Sahara’s story. He was touched and sent kind wishes. We were so excited to find out that the balloons traveled over 60 miles, and that someone took the time to let us know they were found. Thanks, Kevin, you made our day!

Last week was the annual SEMO District Fair. I cannot remember the last time I went to the fair prior to Saturday night. I know Sahara was with us, so it had been at least three years ago (wow). We went to the Styx concert and had a blast, rockin’ out to the songs from our high school years. They still put on a super show! We also saw so many friends, many of whom I hadn’t seen in a long time. That’s one of the things I love most about the fair; it almost always turns into a reunion. It was so good to see everyone.

Please keep in mind that September is Childhood Cancer Awareness Month. Here are some sobering statistics that everyone should know:

Brain Tumors in Children and Young Adults

Brain tumors are the second most common cancer of childhood, and comprise approximately 25% of all pediatric cancers. Over 3,400 children are diagnosed in the U.S. each year; of that, about 2,600 will be under the age of 15.

Brain tumors are the leading cause of solid tumor cancer death in children; they are the third leading cause of cancer death in young adults ages 20-39.

The types of brain tumors found in children are different from those in adults. Further complicating treatment is the fact that children's developing brains are more susceptible to damage from toxic treatments. Although more than 70% of children now survive their tumors, they are often left with long-term side-effects, including:
- Learning problems due to cognitive, neurological, and psychological changes.- Vision and/or hearing impairments that can contribute to problems in school.- Increased risk for second cancers due to the late-effects of treatment.

Only two new treatments for brain tumors have been approved in the past 25 years.

Childhood Cancer Facts
· Childhood cancers are the #1 disease killer of children — more than asthma, cystic fibrosis, diabetes, and pediatric AIDS combined.
· One in every 330 children will develop cancer before the age of 19.
· The National Cancer Institute’s (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
· Childhood cancer is not a single disease, but rather many different types that fall into 12 major categories. Common adult cancers are extremely rare in children, yet many cancers are almost exclusively found in children.
· One out of every five children diagnosed with cancer dies.
· Common cancer symptoms in children — fever, swollen glands, anemia, bruises and infection — are often suspected to be, and at the early stages are treated as, other childhood illnesses.
· Three out of every five children diagnosed with cancer suffer from long-term or late onset side effects.
· Childhood Cancers are cancers that primarily affect children, teens, and young adults. When cancer strikes children and young adults it affects them differently than it would an adult.
· Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
· Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.
· The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents).
· Nationally, childhood cancer is 20 times more prevalent than pediatric AIDS, yet pediatric AIDS receives four times the funding that childhood cancer receives.
· On the average, 12,500 children and adolescents in the U.S. are diagnosed with cancer each year.
· On the average, one in every four elementary schools has a child with cancer.
· On the average, every high school in America has two students who are a current or former cancer patient.
· In the U.S., about 46 children and adolescents are diagnosed with cancer every single school day. That's about the equivalent of two entire classrooms.
· While the cancer death rate has dropped more dramatically for children than for any other age group, 2,300 children and teenagers will die each year from cancer.
· Today, up to 75% of the children with cancer can be cured, yet, some forms of childhood cancers have proven so resistant to treatment that, in spite of research, a cure is elusive.
· Several childhood cancers continue to have a very poor prognosis, including: brain stem tumors, metastatic sarcomas, relapsed acute lymphoblastic leukemia, and relapsed non-Hodgkin's lymphoma.
Here are some things you can do this month (and ALL YEAR ROUND, for the most part!) to support Childhood Cancer Awareness.
None of these things involves any financial burden of any kind (except for eating at Chili's ... but hey, ya gotta eat, right??)
· join team unite to become part of a unified voice against childhood cancer
· join people against childhood cancer (PAC2) to learn of efforts being made around the world to find a cure, raise awareness, and lend support
· tell everyone you know (and even those you don't know) how you, or someone you love, has been touched by childhood cancer
· donate blood
· eat at Chili’s on Monday, September 29th, when Chili’s will donate 100 percent of profits from participating restaurant sales to St. Jude’s
· WEAR GOLD FOR THE KIDS (you really don't need to click that link -- I know you've got SOMETHING gold in your closet!!!!!)
· register to become a bone marrow donor
· let a family that's been touched by childhood cancer know you STILL CARE and haven't forgotten about their struggles ... let a family of an angel know their child remains in your heart
· read this article on Forbes.com
· offer to volunteer at a local childhood cancer center

Sign the Petition to Raise Awareness at www.thepetitionsite.com/1/CureChildhoodCancer (and ask your friends and family to sign, as well!)

Lastly, big thanks to everyone who has purchased tickets to the Rick Springfield show in Cape, benefiting MVTH!!! And thanks to our incredibly generous sponsors from our amazing community…we appreciate your support in these rough economic times. 100% of the funds raised for this event will go directly to MVTH.

In our area, you can designate MVTH as a recipient on your annual United Way pledges!

I’m sure I’ve left out some very important things (which Shannon will quickly bring to my attention). Please know that we appreciate that so many of you continue to read the blog and keep Sahara’s memory alive. We love you all!

Our best to you,
Amy and Shannon

Sold out show

2008-09-04T21:29:00.002-05:00

Excuse me, what happened to the last month? Whip, whirl, and there it flew, in a cloud of fresh roasted corn, juicy peaches, and sunflowers. The kids are back to school, and half the world's pretending that winter is not coming in a few short months.

Speaking of whirlwinds, Amy has been quite the dervish getting ready for the Benefit in Cape Girardeau next month. Thank you to all of you who jumped in quickly--it sold out in a heartbeat. For those who didn't get tickets, we truly wish you could join us, but every inch of the space is full. We can't cram another person in.

For those who are miffed that children cannot attend, we understand...but the law is the law...and to quote that nasty lady in the Wizard of Oz, "Ya wouldn't want to go against the law!"

The event benefits Mississippi Valley Therapeutic Horsemanship, one of the wonderful local service organizations that made Sahara's last year on the planet a little more tolerable. The volunteers and horses there gave that girl so much joy--something to get excited about, and something to hope for.

They need our help--and Sahara would undoubtedly look you in the eye and tell you the same thing. And whether you give $21 or $2100, know that you are giving southeast Missouri's sick and disabled kids a truly healing experience.

Send me an email if you want to give.

Lots of cats out of the bag

2008-08-03T17:55:00.003-05:00

We're coming up for air! We all got thru Sahara's birthday (with more than a few tears, I'll admit) and Amy and Shannon loved the stories about Sahara. Amy told me a great one involving handcuffs and a construction crew--only Sahara!

For those of you who didn't spot us in the crowd, yes the rumors are true: Amy flew to NY on July 25! It was her first time and she managed to eat a dirty water dog without keeling over. Go Amy!

In a few days we'll give you the scoop on all she did and saw--let's just say Rick was involved in a big way. She spent the first few days with me on Long Island, and then headed into the city for some great adventures.

Speaking of Rick, she's got some news...

Get Ready, Cape Girardeau!!!

All right, everybody...you've been patient as I've teased you about something amazing in the works, so here we go!

Please join us on Saturday, October 4 as we welcome Rick Springfield back to Cape Girardeau! Rick has generously agreed to perform a very special solo acoustic show, intimately set at the Buckner Brewing Company, by the river in downtown Cape. All proceeds from the evening will go directly to Mississippi Valley Therapeutic Horsemanship.

There will also be a silent auction, including a guitar signed by Rick, and many other unique items.

We are so excited and we hope to see you there! Come enjoy this fabulous evening with Rick and support a wonderful cause. It's a once-in-a-lifetime opportunity!

Tickets are available EXCLUSIVELY at PMac Music, 2500 William Street, in Cape Girardeau. Seats are very limited and are selling fast, so if you want to go, be sure to head out to PMac and pick up your tickets today! See the show poster for full information.

PMac is also Cape's headquarters for Rick's new CD, "Venus in Overdrive." If you don't have it yet, run, don't walk, to PMac Music!!!

I have a ton of stuff to tell all of you about the last couple of weeks, but I wanted to get the word out about the benefit first! I had a wonderful time in New York City. It was a privilege visiting with Pamela and John, meeting Rosie, Theresa, Colleen, Brenda, Roxann, SO MANY WONDERFUL PEOPLE...thank you all so much for making me feel so welcome. Next time I post I'll include a bunch of photos and the scoop on my trip.

NOW GO OUT AND BUY YOUR TICKETS TO THE CAPE SHOW! We can't wait to see you there!

With love,

Amy

Birthday girls

2008-07-23T22:51:00.003-05:00

By the skin of my teeth (in this time zone anyway) I'm sending a huge bucket of birthday wishes to the lovely Gramma Dooley. Frances, I think about you every single day.

In just a few minutes, the clock will tick its way into a new year for me. This is one of the semi-big ones: it has a 5 at the end...though not at the beginning...yet. I don't have to tell you what I wished for last year, or the year before. Thinking about it now really smacks my priorities into place. This year, my wishes are just as ambitious. And a little more scary, because now I know they don't always come true. But nonetheless, I throw them up into the air, like so many dandelion seeds or butterflies. I see them as a good sign.

Thank you to everyone who shares their Sahara stories today. (And yes, the Cannon family gets special dispensation--you can tell your tales anytime.)

In Sahara’s honor, Shannon has sold t-shirts over the last couple of months, raising money for MVTH. We have only a few shirts left, and we have been stunned by the response. Thank you SO MUCH to everyone who has purchased a shirt! The total collected is…drumroll please…
$2125.00. Can you believe it????? $2125!!!
(Susan F. – your generous donation put us over the top!!! Thank you!!!)

We will present a check to MVTH, hopefully on her birthday, which is on Thursday. I am so excited and so proud of Shannon. He worked so hard on this and it was a total labor of love. Thanks again to everyone who participated!

I thought the attached photo was one of the wonderful things I’ve ever seen. This fantastic family is very special to us. Sahara attended daycare at Christian School for the Young Years and Community Day School. Ms. Kathy, Ms. Jennifer and Ms. Liz continue to be special friends, very near and dear to our hearts. They recently took a family vacation in Kansas City – and the entire family bought Sahara shirts to wear! I just bawled when I saw this picture, but then I smiled, because I know Sahara would absolutely LOVE it!!! Thank you, Jennifer, for giving us this wonderful gift!!!

I suspected that the weeks preceding this one would be tough…and I was right. Everything from random crying spells to sleepless nights (and nightmares when I do sleep). Over the last few days I’ve found myself reliving all of the events that happened two years ago, when this unthinkable journey began. The weird symptoms…the loss of balance…the subtle differences in Sahara that prefaced her death sentence. The first MRI that showed a large mass. The crushing reality of a brain tumor. The biopsy and subsequent days of sheer terror, punctuated with the diagnosis of stage 4 cancer, glioblastoma multiforme. Houston. Stanford. The next seventeen months of doctors, chemo, radiation, surgeries, steroids, scans, alternative therapy, physical therapy, tumor resection…then a glimmer of hope, but ultimately the loss of our precious daughter. My mind presses “play” and the story unravels yet again, every night as I attempt to surrender to slumber.

Shannon and I have done our best to channel our grief into productive and meaningful things, and so far I think we’re doing okay. Neither of us are the types to sit around and feel sorry for ourselves, even though I can understand how easily a parent could slip into the oblivion that sorrow can create. No one who has not lived it can ever truly understand, yet so many miss her as much as we do. Several people have come up to us as time has passed, giving us a hug or pat on the shoulder, and assured us that time will help…that it will get easier…and that they can say this because of their own experience. It is such a sad surprise when this happens, because we did not realize that this person had lost a child. It is difficult to be a member of this club, but we know that we are not alone.

That said, we are most assuredly able to remember time after time after time that Sahara gave us enough memories to fill many pages. She was so funny, with a well-developed sense of humor that went far beyond her young years. I think anyone who knew her could tell something funny that she said or did. She delighted in embarrassing me in any way possible and at every opportunity, and I could never stay mad at her because she would make me laugh about whatever had happened. Pamela asked for posts about funny stories…and I can’t wait to see what comes up. I have a few favorites of my own.

Once, when she was in 6th grade, there was an event at school that parents were invited to attend. One of the DARE officers was present, and was taking questions from the students. Of course, Sahara’s hand shot up at the opportunity. I cringed, wondering what her question would be, and with good reason. He pointed to her and she jumped up. He asked what she’d like to know. Her question, with a sly smile: “So. How old do you think my mom is?” He was very gracious and said something sweet, I think, but I wanted to crawl under her messy desk. (You know, the desk that was so full of crap that it could only be shut on the first day of school, and never again thereafter.)

She once told everyone that I was pregnant and that she couldn’t wait until her new brother or sister got here. It was fun explaining that one away.

She threw a pitcher of ice cold water on my head while I was showering one morning. A most inspiring way to start the day. Very nice.

She took a special, evil joy in cannonballing into the pool while I was dozing on my float. She would always claim total innocence, swearing that she didn’t mean to do it. Yes, she DID.

Once we truly blindsided Shannon on April Fool’s Day…we put a rubber band around the faucet on the kitchen sink…he turned it on twice before he figured out why it was spraying him in the face. We were rolling around and laughing hysterically in the living room as he got soaked.

She dearly loved to dress her cat, Semo, in clothes from Build-a-Bear. Semo did not enjoy this as much as she did. She had the scratches to prove it.

Every time we stayed at a hotel, our ritual was to run in the room and jump on the beds. I still do it. Shhhh.

She loved seeing if she could get a free dessert at a restaurant by telling the server it was her birthday. She would do this on ANY day, not just her birthday…and she would call them cheapskates if they didn’t offer anything.

I could go on and on…and it always makes me smile to think of these silly things. They still overshadow all of the sickness and bad times. The good times weren’t just good, they were awesome. What a blessing she was.

I still keep a pair of her favorite Skechers by the back door, as she would have left them. Her last Butterfinger Blast from Sonic is still in the freezer; I guess someday I’ll have the fortitude to throw it away. The canvas that is our refrigerator still holds a thousand different photos, papers, awards, all the stuff that we put there over the last few years. I think those things will probably stay. I have a photo that she took of herself at front and center, so I’m able to see that big smile first thing every morning. We still wear our orange bracelets. We hold on to what we can, both tangibly and what’s in our minds.

Shannon and I took a vacation trip to Oklahoma recently. We went to Rocklahoma (a five-day 80’s hair metal festival…LOL), in Pryor, OK. I don’t think much happens in Pryor when the music festivals are not in town. (They also host Country Fever, the twangy cousin to Rocklahoma, in June. There’s Bikelahoma, too…something for everyone) The weather was wild while we were there; pouring rain, intense heat, scary storms, you name it (it even made our local news and scared the heck out of my sister). We came out unscathed, thank goodness. The two side stages, however, were flattened. We nicknamed the place Mudstock. Anyway, one of our favorite bands, House of Lords was there. Some of you may remember a Sahara trivia bit, as she was named after their song and album of the same name. As the band came on stage, the rain began to come down in buckets, but the die-hard fans didn’t care. We heard the familiar beat…and the very first song they played was, “Sahara.” It was SO GREAT. Nobody even noticed my tears because we were all soaking wet from the rain. J She absolutely was with us that day. What a cool experience. The rest of the days were fun and we had a great time, but for me, that was the highlight of the week.

We’ll survive her birthday, just as we have survived all of the other firsts, holidays, and days filled with memories. I want the world to remember how much she LOVED her birthday, calling the days before and after the actual day her “birthday week,” how she loved to get cake all over her face just to aggravate me, how she loved ripping the paper off of her presents, and how she loved singing “Happy Birthday” to herself at the top of her lungs. She truly got maximum enjoyment from the blessed event. It was soooo hot on the day she was born, and it looks like it will be again this year. She was a summertime girl in every sense, thriving on sunshine and being outdoors. Maybe when you feel the sun on your face on Thursday, you’ll feel her in its warmth. I know I will.

Next Tuesday, July 29, Rick’s new CD, “Venus in Overdrive” will hit the stores! There are three songs on it that were inspired by Sahara. It is an amazing effort on his part and I know you will all enjoy it immensely! Get ready to pick up your copy! Rick will also be appearing on several morning tv shows next week. Check out www.rickspringfield.com for more information.

Thanks to all of you who continue to read the blog. Keep checking in…we’re working on something EXTREMELY cool and will post more very soon!

Oh, and please don’t forget to send Pamela best wishes and chocolate on Thursday as well!

With love to all of you,
Amy

We now return to our regularly scheduled programming

2008-07-14T21:57:00.000-05:00

We're back on the air. Sorry about the momentary blip. I changed hosts for the website, and in the interim, the main site was down. The blogspot address was still working, but I needed to tug and pull the rest of the site in a little red wagon.

I've got a request for all of you. As many of you know, next Thursday (July 24) would have been Sahara's 14th birthday. I know that's going to bring up lots of emotions, and some of them will be on the sad side. Feel what you feel, I say. It's all good. Tears are a healthy, natural cleansing mechanism from the soul.

But I've got an idea. Rather than posting here that day about how much Sahara is missed, let's do something to really honor her. Let's tell wonderful, funny Sahara stories. I'm giving you over a week to think of something. If it's something her parents didn't know about, all the better.

Think of each tale as a candle burning brightly on her birthday cake. Imagine her laughing so hard, she can't blow all the candles out. I'll open up a birthday thread the night before--and for those 24 hours, we'll go hog wild.

I can't wait to read what you're going to write.

Sahara Shape

2008-06-15T22:25:00.002-05:00

Two posts in one weekend, kids. Try to control the excitement.

Couple of things before I turn this over to Shannon.

Rosie and Julia, thank you--what a great thing you did. Amy and Shannon were just so proud and honored. Big tears all around.

I believe Rick's new album is called Venus in Overdrive. It's coming out next month; mine is reserved on Amazon.com. What are you waiting for? And hey, if any of you are planning to see Rick on Long Island this summer, let me know.

And now, Shannon has important things to say:

Sahara Shape

Hey, y’all. Well, today is Father’s Day, and there have been ups and downs. I want to wish my Pop, Darrell Prim, a Happy Father’s Day. I love you, man.

I’d like to thank everyone who has bought a shirt over the last month - shirt sales are strong and I hope they continue. Yesterday Amy and I went out to MVTH for their first annual horse show. We got to see all the riders and trainers, and they are truly doing some amazing things. When you see those kids smile when they are riding, it proves what MVTH is all about. You’ve got to check out their updated website at www.semohorsetherapy.org. Sahara’s on the front page!!!

One of the things I’ve begun notice over the last few months is that the number 21 is everywhere. Seems like I run into it almost every day. I like to think this is Sahara saying “hey” to me. I also think she says “hey” to several friends who are also noticing the number 21. So if you see that number, she’s saying hi to you too.

In May of 2006, I was overweight and decided to lose 50 pounds. One of the reasons I did this was because Sahara was in such great shape. But then in July, she got sick. You can’t even believe how fast weight falls off when you have a sick child. I ended up losing 121 pounds and 21% of my body fat. I now work out 6 days a week, three days on cardio and three days on strength training. This is hard work but it is worth it, because what I call it is “Sahara Shape.” I want to be in as good of shape as she was. So if anyone out there reads this and needs the motivation to get in shape, tell yourself you want to be in Sahara Shape. Maybe that will help make it a little easier.

See ya,
Shannon

Flies

2008-06-14T15:16:00.002-05:00

Oh no, it hasn't really been nearly a month since we popped our heads up to say hello, has it? Tempus fugit, my Latin teacher used to say, and back then, I'd sit in class, staring out at the waving grass, frisbees whizzing by in the air, dogs yapping along bicycles, barking at the spokes, and I'd think "Not in this class, it doesn't."

Well, it does now. Amy and I have both been super busy at work lately, and now that summer weather is here, we're both spending time admiring the roses and floating away in our pools. She and Shannon are well; and we're all good here in New York, after a couple of scary moments.

For those of you celebrating father's day tomorrow, make it meaningful in Shannon's honor. I know we pick on Shannon here now and then (and he secretly loves it, I'll bet) but the one unwavering thing I can tell you about him is this: the man is an exemplary father. He gave Sahara such a powerful start in life--running alongside her for every step, giving his full A-game. That's how it should be done.

This is a man who won't look back and say "I wish I had____________." So follow his lead. Talk with them, play with them, read with them, pray with them--and love those kids with everything you've got.

Rearview

2008-05-16T17:53:00.005-05:00

For all of you who want the back view of the shirt, here you go. Once again, this is modeled by the lovely and vivacious Elise. What are you waiting for?

You can download an order form here.

Hey! Help a Hungry Horse

2008-05-12T19:40:00.004-05:00

Greetings, fair readers in Saharaland,

We have shirts at last! Let the MVTH fundraiser begin!

Shannon came up with this great idea a while back. He had a couple of shirts printed, and everywhere he went, people started asking how they could get one. The lightbulb over his head started shining (it's so cool when that happens) and he thought the shirts would be a great way to raise some money for Mississippi Valley Therapeutic Horsemanship. So, to do just that, and to honor our sweet girl's memory in this sixth month since her passing, HERE WE GO!

Sahara's darling cousin Elise was kind enough to be our spokesmodel.. (Thank you, Lisey!!) We think the bright orange shirts with black lettering are truly symbolic of Sahara. And of course, they bear her number, the eternal 21.

We're selling them for $21.00 each - we thought that was an appropriate amount!. :) Full details (and a front/back view) are included on the order form. Shannon will have shirts with him most of the time, so if you see him he'll be glad to sell you one - or more! If you wish to order by mail, please print out your order form, fill it out according to your needs, and send your payment to the address shown at the bottom of the form.

All profits from the sale of the shirts will go directly to the good folks at MVTH. We hope to help them out as much as we can. It's something we've wanted to do for a long time, and now we are ready to get started!

Thank you for continuing to read our blog...for continuing to care about us...for keeping Sahara's memory alive and strong...and for helping us support a cause near and dear to our hearts! We love you all!

Have a great week!

With love,
Amy and Shannon

What happened in Vegas...

2008-04-25T14:29:00.003-05:00

Time to catch up...and give you a peek at Amy's photos of Vegas. The ones we can share, anyway...hee hee. Just kidding, husbands.

Most of these need no explanation...except perhaps the pink cake. Turns out Amy has a sweet tooth! We had lunch at the Treasure Island buffet one day (love their custom salads!) and while I was jonesing for the COTTON CANDY and the hot miniature donuts (and I only had one of each), Amy made friends with the pastry chef and he fixed her up with that jumbo slice of Pretty Pink Princess Cake and other delectable goodies.

All a ball, and I can't wait to go back. As for the rest of life, both Amy and I have had super busy weeks, and everything is well. Please join us in sending get well wishes to Amy's colleague Corinna, who is out recovering for the next few weeks.

Playing in the desert

2008-04-15T06:16:00.005-05:00

Alas, it had to end. I keep waking up, wishing I were back in the warm sunshine, listening to upbeat music (it seemed to be 80s week in Vegas) and sipping on a girly frou-frou drink. But NO. Grown-up life and reality beckons. Sigh.

This is the first of several photos we'll share with you...I'll toss the wicked ones into a slideshow over the weekend so you can see what really went on in the land of sun and sin. Hee hee. Just think pink! The trio here is, of course, Amy, Packy, and me (pamela), just after our yummy lunch at Wolfgang Puck at MGM. Of all the things I consumed in Vegas, their potato chips with blue cheese are what I'm missing most.

Here's Amy's take on things...and like a proper New Yorker, I might just chime in:

The Money I Took to Vegas Stayed in Vegas

There is nothing, NOTHING like a few days in Vegas to make you forget about the real world for a while! A few weeks ago, Pamela invited me to join her for a girls' getaway. She had a ton of comps and miles, and I found a great fare on Frontier Airlines (which is now tied with Southwest in my eyes with regard to customer service and on-time flights!). We flew out last Tuesday and spent the rest of the week in the bliss of the desert. Ahhhhh, SUNSHINE!

Vegas was Sahara's most favorite city. It was so strange to be there without her...I saw her everywhere I looked. At one time I stood alone on the sidewalk in the middle of the strip and looked north and south, seeing all of the places we liked to go and remembering the fun we had there. Seeing Rick do EFX at MGM so many times. Late night desserts with Packy at Wolfgang's. The lions and the magic shop at MGM. Donuts and chocolate milk at the Krispy Kreme factory in Excalibur. Hot dogs at New York New York, and Sahara being furious because she wasn't tall enough to ride the roller coaster there. Buying stuff for Shannon at the ESPN Zone. M&M's World and the wonder of turquoise M&M's. The Forum Shops at Caesar's, home of the world's best chocolate covered gummi bears. The Eiffel Tower at Paris, which we scaled on a day that was no less than 110 degrees...it was SO hot in there! The Secret Garden at the Mirage, where I swear the dolphins and she were literally talking with one another. We did it all. I got tears in my eyes several times while I was there, just taking it all in. She never stopped smiling when we were in Vegas.

Let's see...Pamela and I had dinner at Mon Ami Gabi at Paris on Wednesday night. It was chilly and windy, but we still enjoyed our lovely meal on the patio, which banks the strip and has a great view of the fountains at Bellagio. Quite a backdrop for dinner, I thought!

Amy was very brave here. I don't get cold (it's the extra padding I carry around) and I was freezing. I swear, by the time our dinner was done, my poulet grandmere (high-falutin roast chicken) was frozen. I went into the casino and asked the cocktail waitress for hot chocolate.

Thursday night we saw "LOVE" at the Mirage. If you have the opportunity, definitely see this show. It's a Cirque de Soleil production based on the music and story of the Beatles. The performers were so young...so exuberant...and almost superhuman at times. It was great.

I'm now considering a new career in covert operations, because Pamela and I pulled off the best surprise ever last Thursday. Pamela had arranged to have lunch with Packy at Wolfgang's at MGM. I waited, oh-so-stealthily, in the slots areas until I saw Packy walk to the table where Pamela was sitting. I let them say hello and get seated, then I sneaked up behind Packy and ta-daaaaaaa, surprise! She was so shocked and the look on her face was truly a Kodak moment. LOL! We had the greatest lunch. We were also lucky enough to hook up with her a couple more times during the week, including a fabulous Japanese dinner at Hamada (Sahara's fave restaurant) on Friday night. I am SO BLESSED to have such good friends as these gals...it was wonderful spending time with them and I'm so glad that I had the chance to do so. We reminisced about so many great times.

Before dinner on Friday night we saw "KA" at MGM. It's another Cirque show, which guarantees spectacular sets and unbelievable stunts...wow. I couldn't believe how huge this production was...it took the place of EFX, and I was amazed at how they transformed the theatre for the new show. Everything in Vegas is larger than life!

We otherwise filled our days with sunning, shopping and assorted slot play. It was revealed that Pamela is much, much luckier than I am. I think I'm pretty much cursed in the gambling department. Evil one-armed bandits! LOL. I had a blast, though, and wouldn't trade a single moment of my vacation.

Luckier, perhaps, but I have just as much bad luck as good. I didn't return home with the buckets of cash I'd envisioned. Sigh.

I took advantage of every second I could in the sun, primarily at the pool at Treasure Island. I stayed there until at last our trip was over and I had to catch a cab to the airport. Pamela and I said our sad goodbyes and vowed to go back again soon.

One minute I'm basking in the desert sun, the next minute I'm getting off the plane in St. Louis, greeted by freezing temps and spitting rain. YUCK!!!! Bless Shannon, he had my sweet tea waiting in the car. (Vegas has a lot of great food and drinks, but the tea situation is sorely lacking!)

We had a very late meal at Waffle House on our way home from the airport. I'd forgotten how, um, "interesting" that place can be in the middle of the night. We breakfasted with the drunken dregs of humanity and soaked up the local ambience. The experience was made complete by two highly inebriated females fistfighting on the sidewalk outside. Good, good times.

Speaking of Shannon, he did a secret project of his own while I was gone. When we got back home and I walked into the house, I nearly passed out - he'd had hardwood flooring installed in the kitchen, dining and living room areas! WOW!!! It is so gorgeous. What a fantastic surprise. I was just blown away and so impressed that he was able to get it all done while I was out of town. It makes such an incredible difference in the house! Thanks, Shannon, you rock. :)

Now it's back to reality...back to work, and back to trying to fill my days with something worthwhile. We're almost ready to announce our plans to raise a bit of cash for MVTH; just a few more details to iron out before we get this thing rolling.

The forecast for Vegas is sunny, with highs in the low 90's. In Cape, not so much. WAHHHH!

Have a great week!

Love,
Amy

Running away to join the circus

2008-04-13T08:33:00.002-05:00

We're back! The palm trees were gorgeous, the skies were blue and sunny, and after five minutes in the hot Vegas sun, I turned pinker than a giant wad of cotton candy...which I indulged in, too. Yum. It was a wonderful vacation, filled with good conversation and company, delicious food (fish tacos!), excellent shows, and just a few frou-frou drinks with little umbrellas.

And if you notice I said we, that wasn't an accident. Amy and I ran away to Las Vegas for a girls' week in paradise. We laughed, we cried, we told Sahara stories, and we surprised her dear friend Packy who thought she was just meeting ME for lunch. What a treat to watch her face as Amy strolled up to the table.

It was terrific...but I flew home on the redeye and I'm still on Vegas time...so I'm crawling into bed. Photos later!

Meet Aidan

2008-04-04T19:12:00.002-05:00

Direct from his adoring Gramma Dooley, may I introduce Aidan. I think he looks a lot like Jen.

Congratulations, all you wonderful Dooley people. He's a beautiful boy.

Girls, girls, girls

2008-04-04T06:50:00.002-05:00

Good morning! Just a quick check in to say hello and let you know everyone's doing just fine. Gramma Dooley has a new grandson! I'll see if I can't wrangle a photo.

I'm on my way out of town for a multi-part vacation. Can't tell you about ALL of it just yet, but the first chunk involves hours and hours with my best boy friend in the world (yeah!), the christening of my youngest nephew, Landon, and time with my parents, brothers, and their families.

Part two takes me to sunshine, palm trees, great food, excellent entertainment, and did I mention palm trees? Not to mention...well...I will hush. But PALM TREES!

Spring...almost

2008-03-16T19:34:00.003-05:00

Hello, everyone,
After a lengthy bout with a very nasty cold, I think I'm getting healthy again. Why is it that so many folks have been so sick, so often this year? Germ warfare, I tell ya.

The grass is getting greener, the Easter flowers are popping up, and there is hope for actually surviving this awful winter we've had. I loved the snow, but the ice really did me in...I hope we never, ever have another ice storm.

Earlier today, Shannon (who has also been fighting another cold...I think he caught the leftovers of mine) began raking up some of the eight million twigs that have littered our yard since the storms. What a mess. This is the time of year that we look at our house and yard and think, wow, we have a lot of work to do. Perhaps we'll actually be able to tackle some of the larger projects now...everything that has taken a back seat for so long.

I'm looking forward to having a serious garden this year. I'm tired of paying two bucks for a red pepper and getting tasteless tomatoes at the grocery store. Digging in the dirt and seeing the benefits later this summer will be therapeutic, I think.

We went up to the MVTH horse barn a couple of evenings ago...we had a few checks for them, plus we wanted to see the progress that has been made on the barn since we were there last. I was teary-eyed as we drove up the lane, remembering how much Sahara loved to go riding at the barn.

When we walked inside, it was so wonderful to see so many freshly finished walls and new facilities (including a bathroom that Sahara would have been SO happy about!!!). The donations that all of you have made are definitely being put to good use, and you are providing so many blessings to the kids who attend lessons there.

It was so good to see Grayson again! She told us about some great things that are in the planning stages for MVTH, and we hope to be a part of them. They have so many needs and we truly want to help them out any way we can. I'll post here when I have more news of fundraising plans.

I suppose that every year at this time I'll be remembering the last spring break trip that Sahara and I took together. We always enjoyed planning all the fun stuff we wanted to do. In honor of that last spring fling, I'm including one of my favorite photos of her in the blog this time. Our trail ride in the desert was so great - and you can see the pure happiness on her face. I think this photo will explain why MVTH is so dear to our hearts. Sahara lost the use of her two legs, but they gave her four...and a bit of the joy and freedom she used to have.

Have a wonderful week.

With love,

Amy

Lift every voice

2008-03-03T22:23:00.002-06:00

Many of you got to know (and love) Gramma Dooley here, and the luckiest ones of all got to know her, and her wonderful family, in person. Frances and her daughter Jen Hecht are two of the brightest lights in this whole story. Their love for Sahara went well beyond the moon and back. They prayed with all their hearts, gave joyfully, and led the charge, again and again.

Tonight, it's time to turn that around and give back. Gramma Dooley's beloved mother (and Jen's grandmother) passed away this morning. We all believe she's in a better place...but I know that Jen and Frances would be comforted by the thought that we're all saying a little prayer for them this week. You know what to do.

A Season for Sahara

2008-02-28T00:59:00.004-06:00

Lest anyone thinks Amy's been lying in a heap on the gymnasium floor after all that running back and forth on the basketball court, I have to confess. She wrote this several days ago. But I've been too wiped out to post. The good news is, I think my doctor has finally come up with the combo of magic meds to send this cold/sinus monster on its merry way. The bad news? It's taking my brain and typing fingers for a bit of a wild ride. Wheeeeee!

I'm spending the evenings just staring at the tv and wondering if it has always been so intellectual and fascinating. And I'll think the word beverage and type the word bunting.

So, I've spared you all the joys. I seem to be lucid at the moment, which probably means it's time to slurp down more cough syrup.

I hope all of you got the chance to see Rick Springfield on Oprah this week. Not only is the man a talent, he's got a huge heart for his family and his life. I'm always struck when people who are blessed understand that--and are amazed by it themselves.

Well, it's finished. The most difficult basketball season ever because Sahara wasn't on the court...or was she? The Lady Comets ended their spectacular season on Saturday with a perfect record of 8-0. The Southeast Missourian did a great job of covering the story and I was so surprised to see it on the front page Sunday morning. http://www.semissourian.com/story/1313644.html (Thanks, Lindy!)
There's also a photo gallery online at http://www.semissourian.com/gallery/saharateam/

It was an emotional weekend for all of us. We have the most wonderful group of girls, all of whom are so different, yet when they are playing it's all about the team. I've never witnessed such unselfishness, week after week. We are so proud of all of them. I know Sahara is, too. Thanks to everyone who came out to watch the girls play this season.

Most people know that Sahara's number was 21.
We won yesterday's game by 21 points.
Brittany Perkins, (who also wears #21 on her school team) scored 21 points in the game.
We took the girls to see Sahara's beloved Lady Redhawks play Saturday night. They won their 21st game of the season.

Oh yeah, I believe that Sahara was definitely with us. :)

Last night we went to the Upward awards ceremony and it was really nice, yet it was tough, too, because it was the first time I'd sat in the sanctuary of Lynwood Baptist Church since the day we celebrated Sahara's life there back in November. I could picture everything from that day...the flowers, the photos, the mementos, the balloons, the faces of the people we love. I know I'll never look at that room in quite the same way.

I managed to get away last weekend for a quick trip to Nashville, and I'm so glad that I did. I went to see Rick play two nights at the Wildhorse. It was so nice to see so many people that I had not seen in so long. Rhonda, Cindy, Sherry, Paul, Kathleen, Tracy, Stephanie, Stacey, Beth...it was great talking with all of you...and thanks to everyone who came up and gave me a hug and said hello. I truly appreciate all of you and I'm glad you still read the blog. :)

Although he wasn't ready yet, and the band hadn't even heard the song (imagine their surprise), on Saturday night Rick sang the song he's written for Sahara. It's going to be on his new album, which they will begin recording next month. The song is called "Saint Sahara" and he has truly outdone himself with it. I'm glad that I had already heard it before Saturday night, or I would have been crying even harder than I did. LOL. When it's recorded and ready, you all will have a chance to hear it. I can't wait. It's such a sweet tribute to her, and I know that she is getting a kick out of having her own song.

Have a great week!

With love,
Amy

The 21 Club

2008-02-25T01:12:00.002-06:00

There's a very nice piece in the Southeast Missourian this week--make sure you check it out. It's at http://www.semissourian.com/story/1313644.html

Those of us who come here regularly know how much Sahara still affects our lives. We see her in the most wonderful little spaces. Whenever I see something orange, for example, I'm apt to mouth the words "Hey, Sahara" or "I know you're out there, birthday twin." She's forever tied to Gummy Bears for me, and the heavenly aroma of TI body lotion from Vegas, and the tickle of fresh kiwi slices on my tongue.

The article shows how she's still very real on the basketball court, and how her parents pushed aside their grief to support a team of local girls through the season. A fine season it was, and those girls truly championed the meaning of Hope for Hoops. A year ago, that meant something so very different--especially to Amy and Shannon. Now, it's something we can all take into the future--lifting up those who need it along the way.

Who will you inspire today? Who will benefit from your spirit?

Good day sunshine

2008-02-21T05:41:00.002-06:00

Good morning!

Just checking in with the world of Aldridge fans and saying hello. Amy spent last weekend with her wonderful Rickfriends in Nashville, and her quick tales to me by email made me want to pack up a bag and GO. There is an amazing story out of that, but you'll just have to be patient for a while longer. Giggle.

Y'all will be delighted to know that I have just signed on with cold #10,000 for the school year, which means that I am now officially banned from having any more. Or so I'm wishing. Don't offer me a bit of comfort or sympathy (I'll take a tissue, though). I'm just going to be humble and refuse my crown of cough drops. My colleagues and friends all seem to be zipping from one cold right into the next this winter. It's just one big barking thrill.

Take your vitamins and get plenty of sleep. And if you see me coming, run!

Walking

2008-02-06T22:36:00.000-06:00

We have readers from all over the world, with clusters in places near and far. One of those places is Tennessee, so we're crossing our fingers and saying a prayer tonight that all of you are safe and warm in your own beds.

It was 65 degrees in New York today, and though it was rainy and grey, it was wonderful to get outside and breathe. J and I went to a friend's funeral on Sunday (we had two friends die in a four day period last week) and the rabbi had some very good insight on life, and living it well. I'm trying very hard to keep that in mind this week.

We marked three months without Sahara this week, and I'll let Amy tell you about that in just a moment. In the coming month, you'll see some changes here. It will still be a place for people to read Sahara's amazing story, and be inspired by the community that assembled to cheer her on. But it's time for a new look (I half think the template craziness is Sahara messing with us from the great internet in the sky...) and with that, a new focus.

Stay tuned.

Last night I took a long walk. When I got home from work, it was a balmy 71 degrees and it just felt like a good thing to do. The sky was an irritated shade of gray with a swath of churning clouds, and a blustery wind that causes nothing but earaches and bad hair days was blowing through town. The last time I took a walk, I was pushing Sahara around the Stanford campus in her wheelchair, taking photos of her beside the various landmarks. She was happy that day, glad to be going home soon, and it was good to see her smiling as the sun shone on her sweet face. I tried to remember the last time I took a walk by myself through our neighborhood, and I simply could not recall when that might have been. As I walked down the streets that Sahara and I used to walk or bike upon, I felt like such a stranger. I didn’t seem to recognize the houses or the landscape, and I felt as if I didn’t even belong there.

I passed by a house that used to be home to a couple of Sahara’s friends. Since then, their parents have divorced, the kids live elsewhere with their mom, and their dad has put the house up for sale. It sits empty and alone.

I walked down the hill that used to freak Sahara out so badly as she rode her bike. She would always use her feet for brakes instead of stopping the bike properly. Sometimes it worked, sometimes, it did not.

I passed the house that a former angry owner had crashed her car into, doing thousands of dollars in damage to the foundation. The house was put on the market for a fraction of its value, and we three went and roamed around it one evening to see what we thought of the place. Sahara loved that house and truly thought we should buy it. My hate/hate relationship with home improvement didn’t allow that to happen. LOL. She was very disappointed.

Next I saw the area where Sahara “found” her cat, SEMO. Good times.

I rounded a corner and passed by the house where the Tegels used to live. It was one of Sahara’s most favorite places to visit, as it was always bursting at the seams with little girls’ shrieking laughter, incredible barbecues, the terror of the trampoline and, of course, LSU games. Bill has also been known to shoot a few fireworks in that driveway. LOL. It was really, really hard walking past that house and it brought me to tears.

For the rest of my walk, I was just mad. EXTREMELY mad, hurt, resentful, lonely, hollow and furious in general. The ugly sky really matched how I was feeling. I miss her so much in everything I do and everything I see. I saw so many kids playing outside and I was so thoroughly angry that she wasn’t in the driveway shooting hoops with Shannon when I got back home, which is what she SHOULD have been doing. That is, what she should have been doing before life threw us the biggest, most horrible curve ball imaginable.

So much has changed since July, 2006. That 4th of July we enjoyed blowing up a carload of fireworks fuse by fuse in our driveway. I call it 2006 BC – before cancer. Sahara and Shannon always LOVED going to Reeves Boomland and loading up a cart full of things like Tennessee Kickers (our favorite) and a ton of other exploding delights. We would brave the stifling Missouri summer heat and mosquitoes and blast away until they were gone. There was so much smoke that I fear we drove our poor neighbors inside. I can still see places on the pavement that bear burn marks from that extravaganza and the one we had in 2007, which was so different…because Sahara had to watch from her wheelchair. We’d still managed to take her to Boomland, and she enjoyed shopping that day even though she couldn’t run up and down the aisles grabbing anything that caught her fancy. I watched her as Shannon lit each one and ran before it exploded, and I know she loved it, but there was such a forlorn look in her eyes that it broke my heart. She was so tired of not being able to have fun. She was alllll about the fun.

I didn’t realize that going for a walk would be so tough. Argh.

Today marks the third month since we lost our precious girl. I really hate the fifth of each month and wish I could skip it, or at least sleep through it. But it’s almost over, and at least we have basketball practice to distract us for a while this evening. Thank God for basketball.

I’ll have to think about it before I go for another walk. Exercise is overrated, anyway.

Love,
Amy

the template is filled up with snow, or something

2008-02-03T00:15:00.000-06:00

Your eyes do not deceive you. Our trusty blog template is misbehaving at the moment. I've checked out the back end of the site (makes me sound like a proctologist, huh?) and all is well. But sometimes these little hiccups bubble up.

Rest calmly and believe it will eventually get back to normal. It's been a bit of a rough week for me, so I'm concentrating on giving my psyche the cookies and milk it deserves.

Wishing for a blizzard (or, Amy loses her mind)

2008-01-31T06:46:00.000-06:00

There are times when I edit Amy and Shannon just a bit. I can't help it. My inner English major comes out with her red pen and pushes things around, snips out a word here or there, and splits a paragraph so it will be more accessible to a website reader. So far, they've indulged me and haven't smacked me in the head.

But today I am giving you the fullblown Amy, who has clearly lost it. Wishing for a blizzard? Oh sure, I remember those white-coated moments (a pal in Colorado just told me it looked like every tree had been dipped in marshmallow creme!). And in Wisconsin (where I grew up, mostly) they were lovely, surreal, and constant. Now, however, I'd be quite content with neat 1" dustings that sit perfectly on the grass. The panic and stupidity that follow a snowfall far outweigh its aesthetic qualities.

So here's what we must do: if you actually are in a place with the white stuff, shovel it up and ship it to Amy immediately. Perhaps when Fedex pulls up with 3 truckfuls of snow, she will finally jolt back to reality and yearn for something normal. Like a beach.

Hello, everyone,

Thanks so much to everyone who kindly sent me birthday wishes. I survived the day and actually had a lovely evening, thanks to Shannon planning a fantastic surprise dinner for me. It was lovely and I had a great time. I appreciate everyone who made it a special day in spite of being a sad one. And yes, Jen, Shogun rocks.

Our Lady Comets are now 4-0…I wish the whole world could see them play! We are so proud of their hard work and completely unselfish play. Every single one of our girls scored last Saturday! Shannon is such a great coach and cares so much about all of the kids, not just the ones on our team. Being at the Rec Center on Saturdays is the highlight of the week. I can’t believe the season is already half over.

I’m keeping my fingers crossed for the chance of a winter storm. What a stupid winter we are having…where is the SNOW??? (Wait, I know about the east coast snow, courtesy of our dear friends out there…LOL) But what about the deep, beautiful snows we used to get here when we were kids? The snow that closed Meridian for the nearly the entire month of January when I was in the 4th grade??? It wasn’t THAT long ago…yikes. All Sahara wanted last winter was a really awesome snowstorm and she didn’t get one. You know the kind I mean...the heavy snow that is so pretty as it piles up in the yard…covering the driveway as soon as Shannon gets it shoveled…really good packing snow that is the BEST for snowballs…coming down so hard that it drowns out any other noise with the slightest whispers of the flakes as they hit the ground…. I love how it sounds outside when it snows. Traffic goes away, and it is so peaceful. I’d give anything to have one of “Sahara’s snows.”

It seems that a lot of people thought Sahara was named after Rick’s album, “Sahara Snow.” But she was actually born three years before it was released. We didn’t even meet Rick until 1998. It is kind of wild, though…almost like a prelude of sorts. Wow, how much has happened since then…

It’s so easy to see Sahara all around me…and to see the goodness she brought into the lives of so many. I can’t count the times that I’ve gone to the grocery store or the mall and been approached by friends of Sahara…classmates, teachers, and so forth…who will tell me something sweet or funny that she did or said…and how special she was.

I received this email from a fellow Rick fan. I asked her if I could share it with all of you and she said yes. Thought you might enjoy reading it.

Hi Amy and Shannon. I have to tell you your little girl was on my shoulder
today. Weird as it may seem, I have been looking for a scrapbook store around here that has a good selection, crop sessions, etc. and have never been able to find one. Today I opened up the phone book and there was "Bonnie's Place For Scrapbooking. I went over after work today and looked around and was pleasantly surprised, it was exactly what I was looking for. I made my purchases and talked with Bonnie the owner and she started telling me about an event that is taking place there in February. Its called Crop For Kids. You won't believe this, the proceeds and money raised benefits of all things The Pediatric Brain Tumor Foundation.
I about fell over when I heard that. Bonnie started telling me about the lady that is doing it and how her daughter, Paige, was diagnosed with a brain tumor when she was not quite two at the time. She was telling me all that little Paige had gone
through, how they had to put in a central line to give her radiation because she
had to be sedated, etc. So far since removal of the tumor and all the treatment, it was cancerous, her MRI's have remained clean. They are continually checking her for developmental and cognitive difficulties but all seems fine. I told Bonnie about Sahara and she was saddened by her story. I was just floored after going out. Sahara had to have guided me to that store and I don't believe otherwise. It was amazing she knew right where to send me that I would be comfortable and the store was perfect.
You see, she's still here with us and she's letting us know she's here and I believe with all my heart she will continue to let us know that she's around in little ways. Just keep looking and she'll be here when you least expect it.
Isn’t that a cool story? Thanks to Kim A. for letting me post it on the blog.

It takes awareness to get action. Part of our goal to honor Sahara’s memory is to spread the word about the need for helping families who are struggling with this disease, and to encourage giving to worthy institutions to further advance the hope for a cure. Before Sahara got sick, I never had a reason to think about how many children are suffering with brain tumors, much less how many TYPES of tumors exist. I hope that as awareness increases people will get involved and help families in their local areas the way our community (far and near) has graciously supported us. You just can’t do it alone.

Thanks to everyone who continues to read and post…we are honored and humbled by your presence here.

With love,
Amy

Everyone's a star

2008-01-17T05:35:00.000-06:00

Good morning,

The worst of my flu is behind me...I'm down to a lingering wimpy cough and a constant yearning for palm trees. That may have something to do with winter, although it hasn't been that bad. Sunday night's predictions for 70 feet of snow somehow turned into oh, 4 flakes, and that was just dandy with me. (Nancy in Boston, thanks for taking that load for us. No, really.)

The Aldridge clan is keeping busy, doing some very cool things. I've got an update from Shannon below. But here's an inside tip: someone (and it's not the bald man!) is having a birthday tomorrow. Let's give her a giant blogload of birthday kisses.

What’s up, everyone? I haven’t talked to you all in a while, but I thought I’d let you know how things are going. Some days are good, some days I cry off and on all day long. The weird thing about this is when you get up in the morning you don’t know what kind of day you will have.

Today was a good day. We just got home from basketball practice, and any day involving basketball is better. When I last spoke to you about basketball, I wasn’t sure I could do this any longer. I was wrong.

One afternoon in WalMart, a little girl came up to me, and said “Coach Aldridge, I really hope I get on your team this year. My sister played two years for you and had a blast.” Now I’m coaching the Lady Comets again, and I’m commissioner of a girls’ basketball league.

About two years ago, Sahara and I began discussing different ways to run defense and offense. We called this "the tooth and nail,” which my team is running this year - and it’s working. We have jumped out of the gate 2-0, averaging 47.5 points a game, and giving up only 13 points a game.

We have seven girls on our team, five who have played for me in the past, along with two rookies. This team is special. They have dedicated their season to Sahara. They told me they would make me proud - and I told them they already have. I’m proud to have the opportunity to maybe make a difference in the lives of these great girls. God and basketball are a pretty good combination, don’t you think?

We have a very important game this Saturday. We’re playing the Storm, another very talented team. We’d better bring our A-game. More fan support would be awesome! We will be at the SEMO Rec Center on Court B at 8:45 am. Come on out and enjoy some great basketball with a great bunch of kids.

See you on the court!

Coach Shannon

A fresh start

2008-01-07T05:54:00.000-06:00

I can't think of a way to start this without whining. I wanna go back to Florida! I want this blasted crud that's invaded my respiratory system to just go, already. I'm being good, getting rest, vitamins, and taking my medicine, but this flu is a tenacious little beast. I wanna go back to Florida and rest under a palm tree.

The good news is, I've got lots from Amy, so I'll shut up and try to imagine this morning's sunrise behind a bunch of palm trees. Wah.

Hello, everyone, and happy new year to all of you.

We survived Christmas...thanks to being far away, in the sun, where we could relax, think and just stare at the water for a while. We went to Key Largo, and the little resort we stayed at was truly a slice of paradise. It was small and private and absolutely gorgeous.

For a while, we were anonymous, and I think that's what we needed as we tried to clear our heads. We had the best seafood, and I was delighted to have key lime pie for dessert each evening. :)

New Year's Eve was actually the most difficult part of the holidays for me. At about a quarter til midnight,I began to cry...and I bawled my eyes out for about an hour and a half. Knowing that the year was ending, replaying so many defining moments in my mind, and simply not having Sahara here to toast at midnight...it was incredibly hard.

We always toasted with Coke in wine glasses...LOL. Afterward she would run out on the deck and scream "HAPPY NEW YEAR!" at the top of her lungs. She loved that little tradition. I did too.

Somehow, we're putting one foot in front of the other and are living through the days. Saturday marked two months since she passed away. Those monthly anniversaries are really going to burn for a while.

We're both staying busy with work, and that is a good thing.Thank goodness Upward basketball started on Saturday! Our Lady Comets won their first game, and all of the girls played great and had so much fun. Shannon coached that game, then reffed five more games after that. He was beat when he got home late in the afternoon - but he had a blast with all the kids. It was a wonderful day. So many people came up to us, talking and remembering how much Sahara enjoyed basketball...and how GREAT she was at the game. She was deeply missed on the court. But I know she was there in spirit. It was tough at times, but I know that's where she would want us to be on Saturday mornings.

Also on Saturday, I had a WONDERFUL pair of visitors, Sahara's dear friends Caroline and Lexi (and Tanda,too :). They brought me some cookies and hung out for a while. I thank God that Sahara had such great friends as these. I love you guys so much!!! I'm constantly blessed by Sahara's friends...I get the best hugs when we see each other around town, and I received some wonderful Christmas cards with such heartfelt writings (a special thanks to Maria...you are a sweetheart). It all helps and means so much.

Y'all take care and have a great week!

With love,
Amy

Time may change me...I can't trace time

2008-01-01T12:29:00.000-06:00

Happy 2008, everyone. I was never so happy to mark the new year. At midnight, I raised a glass to new beginnings, to better times, and choked back the last mouthful of tears on 2007. Good riddance.

Amy and Shannon marked the holidays quietly--and managed to get away for a few days in the sun, too. She described it as a mix of laughter, tears, and lots of silence. Silence, when staring at palm trees and the ocean, is an incredibly healing force. I'm filled with hope for them this year.

J and I returned from our mini-break on Wednesday morning and by Friday I realized I'd brought a souvenir home...no, not THAT! Some wretched coughing child passed on the speed-plague and I've been miserable for days. Go buy stock in Kleenex. I'll make you rich.

My resolution: Laugh more, and stop taking it all so seriously. Life is too damn short.

Free as a bird now

2007-12-23T19:03:00.000-06:00

Christmas Eve is almost upon us, and we're spending a few precious days in the sunshine. There's something to be said for riding with the top down in December. And for hearing the phrase Merry Christmas at every turn. Everyone has a right to celebrate openly and with a joyful heart, no matter what holiday they observe.

This year, so many of us were blessed to be part of this story. A story of hope, faith, determination, and even miracles. A story of profound love and courage. And although the story took an awful twist, I cannot and do not believe it is over.

Don't you believe that all of us are a little better off, a little kinder, a little more appreciative, for having been involved? I know I am. I know I met people along the way who amazed me with their spirit, and I now count them among my cherished friends.

To all of them, and all of you who keep coming back here to show your love for everyone in Sahara's world, best wishes for a Christmas filled with blessings, joy, and laughter.

Closing out the year...with a big sigh

2007-12-20T21:32:00.000-06:00

Hello everyone,

2007 - it's finally coming to an end. This year has been full of so many things...the highs, the lows, and the unimaginable. You know, I never stopped believing that Sahara would beat that tumor. I never let myself believe that she would actually die! Maybe I figured that if I never let myself believe it, then Sahara would never believe it, either. She knew that I was never going to give up. And she certainly never gave up. She always talked about the future and did not dwell on the past. Time just wasn't on her side, and her body was so tired. It was time for her to rest. And as much as we have always loved this time of the year, I have to admit that I will be glad to see the lights and decorations put away. It's just too much.

There is, unfortunately, another little boy in our area with a brain tumor, and he and his family need your prayers. His name is Gunner Gillespie. Gunner's dad, Gus, is the coach of the Marshall County High School boys basketball team. As you can imagine, this immediately struck a chord with us on many levels. Basketball gets into your blood, and surrounds you with great people who believe in KIDS. So please, keep this family in your thoughts. Gunner's website is http://caringbridge.org/visit/gunnergillespie. If you have a moment, consider adding a note of encouragement to their guest book. I know they will appreciate it, as we have appreciated all of the support you have given to us.

We are working on some very cool things to do in honor of Sahara in the coming year. I'm excited to have some projects to keep me busy. And of course, Upward Basketball games begin in January, so that will be a great way to focus on something very worthwhile.

Somehow, we are surviving...literally taking this one day at a time...and I won't say it's getting any easier, because it really isn't. But we are learning to function again. We've been keeping to ourselves for the most part, and will eventually start coming out of our self-imposed shells. For now, though, we're just searching for that elusive thing called peace.

We wish you blessings and a sweet Christmas. Please try to keep your holidays from being too commercialized...and stressful...don't lose the true meaning of the celebration. Maybe next year we'll be able to participate in the season. Only time will tell.

God bless you all.

With love,
Amy and Shannon

Speaking words of wisdom

2007-12-14T05:39:00.000-06:00

I debated whether to go with that (from Let it Be) or Ice, Ice Baby...but then I realized that a good bunch of you are too young to remember that monstrosity of a song. And don't go looking it up. Truly a mistake, although the stolen riff from Queen and David Bowie's Under Pressure IS a brilliant bit.

It is cold and icy this morning in New York, but it's supposed to warm up quickly, before we get hit again tomorrow. I guess we're going to have a winter this year. I was hoping we'd be off the hook. I hope your place in the world is warm and safe. Preferably with palm trees and drinks that involve small umbrellas and fresh coconut...and if you're there, maybe Amy and I need to come inspect or something. Hmmm.

She and Shannon are feeling their loss more these days, and that's absolutely to be expected, in this season of holiday wonders. So many people have wrapped them in love, offering them places to go, carols to sing, cookies to be tasted. And while that warms their hearts to no end, right now it's too hard--too painful a reminder of what they've lost. So, if they say no...please don't be hurt. They know your intentions are good...they just need more time by themselves.

Rest assured they won't become crabby little hermits...these are the people who gave us Sahara, for God's sake. But if they need quiet time at home, alone with nothing but a wheel of cheese, then that's what we can give them. There will be plenty of time for cookies and mistletoe in 2008.

Looking for the holiday spirit

2007-12-07T11:00:00.000-06:00

Computer's behaving, snow's just a little dust on the grass, and a dear friend sent me a box full of fragrant balsam wreaths to deck the front of the house. And, my oldest niece and nephew just showed up in my email, on Santa's lap and beaming. I'm blessed.

Here is Amy's slightly belated blogbit. It's all my fault.

Hello, everyone,

Well, it’s here. It’s everywhere, actually…the Christmas season. And today, exactly one month after Sahara passed, there were snow flurries. She dearly loved the Christmas holiday and we would always decorate every room in the house. She even had her own personal tree in her room. So far, I’ve only had the heart to hang her Christmas cat doorknob hanger on her bedroom door. That just might be the only decoration this year. We’ll see. Maybe the spirit of Christmas will sneak up and surprise me.

I can’t believe she’s been gone for a month already…this time warp I’m living in just keeps on swirling. The fifth day of each month will always be a sad anniversary. But we are doing our best to keep busy, and overall I think we’re doing fairly well.

Our Lady Comets had their first practice last night, and I have to tell you, these girls are going to be GREAT! It was so much fun to see all of them again. They were all excited and ready to play. Upward Basketball is such a fantastic program. It’s going to be really good therapy for Shannon and me.

I have a couple of things I’d like to share with all of you. If you haven’t checked out Rick’s new Christmas album, then do yourself a favor and add it to your collection. It is called “Christmas with You” and it is absolutely wonderful. You can pick it up locally at P-Mac Music here in Cape Girardeau, where it is the NUMBER ONE SELLING ALBUM THIS WEEK, beating out new releases by Seether and Kid Rock! I love it!!! You can also order the cd online at www.rickspringfield.com.

All proceeds from the song "CHRISTMAS WITH YOU" are donated to support the US Military Organization American Gold star Mothers, Inc. (AGSM). AGSM is an organization of mothers who have lost a son or daughter in the service of our country. If you would like information on a grassroots holiday fundraiser sponsored by Rick’s fans
for this very worthy organization, please check out http://www.jasonthompson.org/XMAS%202007.html

And finally, here is the link to the video for “Christmas with You” – enjoy. But I challenge you not to cry – what a huge debt we all owe to our soldiers.
http://www.youtube.com/watch?v=4uHYHHEQwcE

With love,
Amy

one

2007-12-05T22:38:00.000-06:00

Greetings from cold and wimpily snowy Long Island. I left the office this evening in my cuddliest purple polarfleece jacket, a pink polarfleece hat, one black glove, one white one, and sandals. (I have my limits on the winter stuff.) I was surprised when I got to my car: someone had cleaned the windows for me. It's little gifts like this that make life worth it.

As I dug through my trunk to find my own scraper (because apparently it's time), I discovered my pink Crocs...and of course I thought of Sahara. In her honor, I sang Christmas carols the whole way home.

Amy wrote a lovely piece earlier and I'm supposed to post it tonight, but my email account is misbehaving. So have patience, good friends, and with any luck I'll be able to share her words in the morning.

Be gentle with yourselves...watch snowflakes. Visit Santa. Light the candles.

A Horse Tale

2007-11-30T19:12:00.000-06:00

Hello, everyone,

Well, I made it through my first full week back at work. It is very strange being there all day, every day. I constantly feel like I'm forgetting something...like I should be taking care of something for Sahara. I know it will get better with time, but for now it's pretty tough.

Shannon's been working hard and is also preparing for Upward Basketball. Practice starts next week! He is excited and can't wait to start getting the Lady Comets ready for the season. We have a great group of girls and it will be a lot of fun.

I'd like to thank the generous folks who have been making donations to Mississippi Valley Therapeutic Horsemanship in honor of Sahara. They are so grateful for your kindness. Here is a photo that really shows how much that organization did for her - they gave her freedom, fun, friendship, and horses! I love this picture...she is smiling and so happy to be there. I love how her little red wheelchair is left behind on the platform, and she is doing something she loved to do before she got sick. I love how the amazing volunteers are smiling and having fun with her as she rode. You can see how much they all cared for Sahara. And of course, Shannon's beaming in the background, knowing that Sahara was enjoying herself for a while. Riding days were GREAT days. Margie told me that they are having this photo enlarged and framed to hang on the wall there. That makes me so very proud.

Please visit their website, and if you feel led to do it, support this worthy organization with your time, talent or cash. When you see the kids' faces as they ride, you will understand how special this place really is.

http://www.semohorsetherapy.org/opening.htm

Have a great weekend.

With love,
Amy

Things we said today

2007-11-28T03:26:00.000-06:00

One major first down, dozens more to go. Amy and I had a long talk just before Thanksgiving, and we agreed to just take things one moment at a time...and if that didn't work, to just enjoy the mashed potatoes. Sometimes in life it is the small things that comfort most.

I spent the holiday with friends, an extended family that welcomed us with open arms. I think I needed to be around laughter and joy, and got that...along with good food and conversation. I'm still swooning over the sweet potatoes. And the broccoli.

As time marches on I'm finding myself more melancholy about Sahara's death. Don't get me wrong; it was always heartbreaking. But in the early days, perhaps a lot of us comforted ourselves by muttering things like "Sahara would have wanted us to..." And this may all be wise and true. But here I am, bordering on enraged and sad, facing it all with more of a "Oh, I wish Sahara had lived to see THIS..."

For the moment, I'm riding with that. The tide of emotions does its thing, whether we want it to or not. Many of you have written to check in. We're all moving forward. And it is good to know that you are there for Amy and Shannon.

Another Angel

I was so sad to learn that Katie Metz, another beautiful 13 year old girl with a wretched brain tumor, passed away on Friday. I had prayed really hard for her to make it through Thanksgiving, so that day would not be marred forever for her family. Somehow, she did. There were so many similarities between Katie and Sahara. They were born just a few days apart, both had been very athletic, and had similar tumors. They lived almost the same amount of time. It breaks my heart yet again that another family has to endure such sorrow. Like me, Katie's mom searched the world over for answers, lived the life of the hospital homeless for a year and a half, managed the unmanageable, and fought like hell to save her daughter. Tina, I salute you. We did our best.

Throughout Sahara's journey and my documentation of it via this blog, I have always tried to keep it positive, working through all of the bad things and keeping faith and hope alive. I will continue to do so in the future, but today I want to share something that explains the true pain of what this experience is about. This poem was posted on angel Brooke Williams' blog - her mother, Gina, borrowed it from another site as well. It sums up very accurately how we all feel as parents who have lived the nightmare. Sahara faced all of this and more.

I HOPE...
I hope you never have to hear the words,
"Your child has cancer."
I hope you never have to hear,
"the prognosis is not good".
I hope you never have to prepare to undergo radiation or chemotherapy,
have a port surgically inserted into their chest,
be connected to IV poles.
Look at you with fear in their eyes and say,
"Don't worry Mommy, everything will be okay."
I hope you never have to hold your child as they vomit green bile,
I hope you never have to feed them ice chips for lunch,
I hope you never have to watch the "cure" you pray for slowly take away their identity, as they lose their hair,
become skeletal,
swell up from steroids,
become barely or unable to walk or move,
and look at you with hope in their eyes and say,
"It's going to be okay, Mommy."
I hope you never have to stay in the hospital for weeks, months or years at a time,
where there is no privacy, sleeping on a slab, with your face to the wall,
where you cry in muffled silence.
I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly,
after just being told, "there is nothing more we can do."
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.
I hope you never have to see a child's head bolted to a table as they receive radiation.
I hope you never have to take your child home
(grateful but so afraid)
in a wheelchair because the chemo and radiation has damaged their muscles,
35 pounds lighter,
pale, bald, and scarred.
And they look at you with faith in their eyes and say,
"It's going to be okay Mommy."
I hope you never have to watch a family wandering aimlessly,
minutes after their child's body has been removed.
I hope you never have to face the few friends that have stuck by you and hear them say,
"Thank God, that is over with,"
...because you know it never will be.
Your life becomes a whirl of doctors, blood test and MRI's and you try to get your life back to "normal".
While living in mind-numbing fear that anyone of these tests could result in hearing the dreaded words...
"The cancer has returned" or "the tumor is growing".
And your friends become even fewer.
I hope you never have to experience any of these things,...Because...only then...
Will you understand....
Written by: Carol Baan

But there is one stark difference between our family and the tormented writer of this poem...because through the love and inspiration of Sahara we have been blessed with MORE friends than we ever thought possible. We were never alone in our fight. We never had to wonder if people cared or understood what we were going through...because we KNEW that they did. GOD BLESS EVERYONE WHO HAS TRAVELED THIS JOURNEY WITH US. Thank you all.

With love and GRATITUDE,
Amy

On families

2007-11-21T19:30:00.000-06:00

All this week, I've been enjoying conversations with friends, coworkers, and family about tomorrow. Too often, we gravitate to the food (but isn't it all so GOOD?) and shy away from talking about the meaning behind it.

I'm not referring to Pilgrims, Native Americans, or all the others who set the table and set the course. Nor am I, despite any excessively joyful expressions at today's early escape, talking about the lovely long weekend that lies ahead.

See, those things are all good, but they're the green bean casserole. They're the cranberry sauce, and not the kind with toasted walnuts and fragrant bits of orange zest. They might even be the turkey. But they're not the mashed potatoes. Mashed potatoes are my "if I somehow ended up in the pokey and was headed down the green mile, this is what I'd ask for" food.

In life, the families we build are the mashed potatoes. I was blessed with a good family at birth. But I moved away. I see them several times a year, and it's wonderful. I keep their photos on my desk at work. My brothers may be in their 30s and 40s, but they are still "the boys" and probably always will be.

But over the past 18 months, I've slowly been growing a new family. It doesn't replace the first. Never could, never should. Yet, there they are: people I would want at my table tomorrow, if only geography were a little kinder. People who open their arms and their hearts and say "home."

Who are those people for you? Do they know?

Hello, everyone,

Yesterday was a "cry day." I tackled what used to be my computer room (and ultimately became a closet) and began bagging up stuff...bags of what has become trash, and bags of brand new toys for Toys for Tots. And I cried. And cried. Everywhere I look, Sahara's stuff jumps out at me.

Last night we went to see the Lady Redhawks play for the first time this year. What I didn't expect was to nearly lose my breath when I walked into the gym...the last time we were there was for Rick's show last December. And before that, Sahara played ball there.

For about 10 minutes it was just about more than I could stand, smelling the popcorn she loved so much, seeing the people we always sat with at games in the past...but I stuck it out and made it through the game, which the Lady Redhawks won. They are now 4-0, and I'm thinking that Sahara is guiding the team. :)

The "firsts" are so hard. Everything we used to do as a family, we must now do without Sahara. And it sucks.

But we have to face the firsts and keep going, because she wouldn't be pleased if we did otherwise.

Now we have to get through Thanksgiving. Sahara LOVED Thanksgiving...all the food, playing with her cousins, being at Sissy's house. She was looking so forward to it this year. The main things she wanted were ham and apple pie. So, I think I'll make an apple pie today. Iknow my sister will have the ham covered. LOL.

While we are grieving so much, we still know how blessed we are. Thank God for Sahara - she made our lives complete and was a bright light for so many others. We are still receiving beautiful cards from people all over the world. We are still hearing new funny stories about our sweet girl. We are so thankful for the wonderful 13 years we had with her, although it could never be enough.

I'm thankful for all of you who have given donations to Mississippi Valley Therapeutic Horsemanship. What a God-sent organization they are. Last week they sent me a photo of Sahara riding, and I'm going to post it when I get the digital file. A picture is worth a thousand words, and you'll see why. They have renamed the horse she rode...it was Candy, now she is called "Sahara's Candy."

How cool is that??? I know Sahara is smiling about it.

We all need to be more thankful...we should stop taking so many things for granted, though in our busy lives it is so easy to do. Surround yourselves with people you love and who love you back. And try to do some good each day, no matter how great or small.

Safe travels to all who are hitting the road for the holiday. We wish each and every one of you a blessed, peaceful Thanksgiving.
With love,
Amy and Shannon

Smoke gets in your eyes (and your hair, and your clothes)

2007-11-15T22:25:00.000-06:00

Hello all,

I can't begin to express our gratitude to each and every one of you for your prayers, your kindness and gifts of love. Losing Sahara was undoubtedly the hardest thing we will ever face, but your support has helped us tremendously. We hope we honored her well at her Celebration of Life. So many people have told us that it was unlike anything they had ever seen...and we are proud that so many were touched by Sahara's strength and grace. I've been asked for video from the celebration, and I'm working to see what I can do in that regard. I will be posting more in days to come about a variety of things, so I hope you all will continue to check in occasionally. This blog has been so therapeutic for me on so many days, and I'd like to keep it going.

It's a bit late since it's the day of, but I want to mention the Great American Smokeout. People keep asking what can they do, how can they honor Sahara...here's a perfect idea: quit smoking. At least give it a try! Sahara had no qualms whatsover about telling people, often complete strangers, that smoking was bad for them and that they really needed to stop! She told that to a man on our street one day as he walked past our driveway. (She never really heeded that "Don't Talk to Strangers" admonition. LOL.) Anyway, it's a free effort, it's important, and she would be happy if you try to give it up. :)

God bless each and every one of you, and I'll talk to you again very soon.

All our love,
Amy and Shannon

Free

2007-11-12T21:26:00.000-06:00

One week...the world can change so much in the space of a week.

Sahara had a powerful sendoff on Saturday, and over the coming days, I plan to share some of the messages with you. I was so honored to be part of that community. The love in the room was alive, pulsing with light and laughter as we remembered the days and moments of Sahara's brief but amazing life.

We wept--men and women, boys and girls, all heartbroken over the loss. But even in our sorrow, we thanked God for Sahara. She truly was one of the miracles.

Or, as Amy so eloquently put it as she spoke to the utterly silent congregation, Wasn't she awesome?

Bringing your love in my pocket

2007-11-09T04:55:00.000-06:00

I'm off to Cape Girardeau to celebrate Sahara's all too short life with those who loved her. To everyone who has sent messages here, on the newsgroups, and by email, thank you from the bottom of my heart. Amy and Shannon know about every single one, and the collective warmth of your voices is an enormous comfort.

I'll tell you all about it Monday.

Thank you for being part of this journey.

I keep my eyes wide open all the time

2007-11-07T20:25:00.000-06:00

Good evening, Sahara fans...

We've all had a few days to absorb the shock, and I am so proud to tell you that Amy and Shannon are riding the waves, facing all the tasks that are necessary, and are planning for Saturday to be a true celebration of all Sahara was. Come prepared to laugh, cry, sing, shout, and feast upon the tales of this child's life from her first breath to her last.

Sahara's Celebration of Life will take place on Saturday, November 10, at Lynwood Baptist Church in Cape Girardeau. All are welcome.

Many people have written to ask what they can do to honor Sahara's memory. The offers are lovely, but for now, let's concentrate on getting her family through this difficult time. Very soon, we'll make some suggestions for things Sahara absolutely would have loved. And that's how it should be.

Wishing you grace and peace (and safe travels),
pamela

Calling all angels

2007-11-05T21:39:00.000-06:00

I've started this blog at least ten times and hit the delete key, unable to find the words that convey what is in my heart, and what is about to take your breath away.

Sahara died this evening.

She went peacefully, in her sleep at home, after a full day of hard work at physical therapy. One moment, on earth...the next, in heaven. Gone in a breath, in a heartbeat.

Amy and Shannon are broken and yet they are resilient. They know their beautiful, sassy daughter is in a better place, and at the same time, they are stunned and miss her terribly. I talked with both of them this evening, and we cried together. But even in our sorrow, we celebrated that amazing child who danced into our lives in an absolute explosion of energy and joy. She was bright and tenacious and wise beyond her years.

Sahara bit into life like a perfectly ripe and dripping peach, and howled with laughter as the juice ran down her chin. She was an athlete, a warrior, a teacher, a comic, a minister, a child of God, and an extraordinary girl.

She changed us all.

I have no doubt that she is plopped out on the sofa next to God tonight, exhausted after shooting 17 perfect 3-point shots, and giving God and Jesus major giggle fits as they relive some of her magical moments on earth.

They are lucky to have her...and we are blessed to have known her.

I'll post more when I know more. Amy and Shannon need your prayers right now, so wherever you are, please pray that they find comfort. We're going to cry our eyes out tonight, and then we're all going to imagine Sahara looking down on us and snorting. So in her honor, toss your head, find a memory to celebrate, and laugh from the deepest part of your belly. That is the only tribute that can possibly do her justice.

Love,
pamela

New beginnings

2007-11-04T09:51:00.000-06:00

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

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

I dare you not to cry at least once.

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

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

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

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

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

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

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

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

With love and new optimism,
Amy

California Dreamin...aka quite possibly the longest blog post ever

2007-11-04T09:41:00.000-06:00

At long last, the true and complete story of the miracles that tumbled into place for Sahara. Savor every word:

“I will never, ever give up.” That’s what I told Sahara after the first doctor told us that her tumor was inoperable, always fatal, and that even if we sought out other opinions we would be told the same thing. I didn’t believe it then and I certainly don’t believe it now.

When your child is sick, you can never stop searching for answers. Somebody, somewhere, just might have the ability to help you - finding that somebody is ultimately a parent’s responsibility, because even though I truly wish to believe that the vast majority of medical professionals treating cancer have enough experience and education, along with their patients’ best interests in mind, it has been our personal and extremely painful experience that there exists the occasional ego, greed, and, most disturbingly, errors of horrific magnitude. Then there is the unnerving fact that cancer is a business, an you’re only kidding yourself if you don’t believe it. (If you would care to read about some of the frightening things happening in our country, I invite you to bookmark www.newstarget.com. You might get angry reading the articles…but if more Americans would GET mad, then maybe things would change.)

If you are reading this and have a child, or any family member, who is stricken with cancer or any other life-threatening disease, I implore you: get a second opinion. If you aren’t comfortable with what happens, then get a third. Then get a fourth if you want to -it’s your right! Check out the statistics on how often pathology reports are incorrect - you will be justly horrified. It happened to us - and it could happen to you.

It turns out that our fourth opinion was, in Sahara’s case, somewhat of a miracle.

Month after month, MRI after MRI, Sahara’s tumor, which was initially incorrectly diagnosed as a glioblastoma multiforme stage 4, did not appear to me to have the same characteristics and shape of those I had seen when doing research online. It wasn’t growing rapidly…it wasn’t spreading through her brain like the deadly “fog” of a gbm. It was round and fairly well-defined. Then, one day back in April, after going over her scans, one of the radiologists at the Burzynski Clinic in Houston asked one of our doctors there, “this is a low-grade tumor, right?” Dr. Samuel relayed this to me, which only made me suspect even more that it was NOT a gbm. (I will always be grateful to the people at the Burzynski Clinic…antineoplaston therapy bought Sahara nine months of precious time.) The conversation gave me the encouragement I needed to begin searching for a surgeon…THE surgeon. The one who could go in after this monster and take it out of our baby’s head. I knew he was out there. Somewhere. I began scouring the internet even more than I had already been doing. Shannon and I talked it over at great length, and we both agreed that if we could find this surgeon, we would take her to have the surgery as soon as possible.

And then I found him. The Chuck Norris of pediatric neurosurgeons. The man who routinely operates on children with “inoperable” brain tumors.

The man who, on September 12th, removed 70% of Sahara’s “inoperable” tumor.

His name is Dr. Michael Edwards, the Director of Pediatric Neurosurgery at Lucile Packard Children’s Hospital at Stanford University in Palo Alto, California. I call him and his staff “the dream team” - because our dream of saving Sahara’s life is now much closer to reality than ever before. I can’t begin to express our gratitude to these incredibly compassionate and brilliant individuals, but we are so thankful for them…Dr. Lin, Dr. Klugh, Carol Ann, Jodette, Morisa, the residents and fellows (I wish I could remember everyone’s names, but I seem to be failing in that regard these days). We appreciate ALL of them so much!

The last week of August, I had sent an email to Dr. Edwards and to Morisa, the patient coordinator, asking if I could send Sahara’s records to them for review. I was feeling terrible, and so helpless, as we had learned a few days prior that the tumor had grown a bit. I was actually sitting in Capaha Park late on a Thursday afternoon, crying my eyes out and praying for a miracle.

And then, Morisa called me. She said to send Sahara’s records overnight and that Dr. Edwards would look over them as soon as he got back in town the following Tuesday. I was ecstatic! I ran home and got everything together, then flew to the FedEx office (so glad they’re open late). I told Shannon that I had a really good feeling about what was about to happen.

Dr. Edwards responded to me immediately after receiving the package containing Sahara’s MRI’s and medical records. He agreed with my suspicion that the tumor was not a gbm. He said he thought that it was a lower-grade tumor, and that he was confident that he could get most of it out. He scheduled her surgery that same day! Within a week’s time we went from an incredibly low point to a new peak of hope.

We raced to put together the trip to California, and five days after the conversation with Dr. Edwards, we arrived at Stanford. Sahara then had two days of tests and evaluations, and she was really in pitiful shape. Wednesday morning, September 12th, we admitted her for surgery, which lasted over ten hours. We basically went crazy all day long, but the reassuring visits from the nurses helped keep us together. We walked up and down hallways in every direction, roamed around in the gardens outside, checked out the various food offerings, anything to keep busy. Everything went so well, and she came through it all just fine. When we were finally able to see her in the PICU, it was such a relief…she had made it. Considering what she’d just been through, she looked really good!

The next morning she was given another MRI. The before and after images of the tumor are nothing short of startling. When Dr. Edwards showed them to us on the computer screen, it took our breath away. So much of the monster was now removed…it was an amazing moment and we will never forget it.

The tumor pathology reports took a few days to come back. As I mentioned before, the diagnosis is a ganglioglioma, a low grade tumor, although it does have some anaplastic features. It is still a very dangerous tumor because of its location and hodgepodge of cellular composition. But it’s we know it is not a gbm. And 70% of it is GONE. You can’t change the past, and what’s done is done, but we can’t help but lament over what might have been…what could have been…if we had been lucky enough to have the right surgeon the FIRST time. (Or at the very least, a surgeon who would have referred us to someone who could have performed the surgery, even if he could not. Ah, but that would have meant losing a patient to another institution; but it happened anyway.) At any rate, it continues to cause me a lot of sleepless nights, and Shannon and I really get upset when we talk about it. It is absolutely sickening.

She spent five nights in the PICU, not because she needed to be there, but because there were no rooms available for her on the main floor! LPCH is a small hospital, very specialized, and tough to get into at times. We slept where we could, when we could. Sahara did so well - she was off the ventilator the day after surgery, and she was eating regular food two days post-op. (Shhhhh, that was supposed to be a secret. Sorry, Dr. Edwards. LOL.)

After we were able to get a regular room, we stayed there for a week. It was amazing to see how much better she was looking, even though she had just had major brain surgery. She had more feeling and movement in her right side, her eyes were clearer, and her incision was healing very quickly.

The next week, we had the good fortune to have Sahara admitted into the Comprehensive Rehab Unit at Stanford Hospital, which is adjacent to LPCH. This is an acute rehab facility that serves patients with all kinds of injuries and disabilities. We met people who had been in accidents, who had strokes, who had knee and hip surgeries, and one very sweet young mom with multiple sclerosis. Sahara was the baby on the floor! She was blessed to have an AMAZING group of physical, occupational and speech therapists who worked with her for five weeks. Without them, I don’t know what I would have done! I am so grateful to them for their help (and patience with me….oy) during a time that had a lot of stress thrown in to keep it all interesting. They kept her moving, and they got her on her feet. Sahara actually cried when it was time to be discharged, because she said she was going to miss everyone so much. Thank you so much C-1 staff - we love you! (Thanks to Lisa, Chris, Barbara and Sandy for the wonderful gifts!!!)

Sahara had her share of setbacks and annoyances while we were there, but she always worked as hard as she could. If she felt bad, we let her rest. Coming off the decadron has been incredibly hard on her at times. It made her so tired and weak that she couldn’t even hold her head up some days. But most of the time she was ready to work. She even had school…it was only half an hour a day, but she really enjoyed it. She had a very nice teacher named Kevin, and they worked on math and literature together. I was glad to see her using her mind - one can only watch tv for so long.

As our time to leave drew near, Sahara had to have another MRI. Talk about nervous…I absolutely hate MRI days anyway…but this was a big one. After a very long wait to get worked into the radiology schedule, it was finally done. The wait for results always drives me crazy - but thank God, the results were good. The tumor showed no new growth since she had surgery. There are still some funky cystic areas, but we can deal with them later if they don’t wither and go away on their own. Dr. Edwards was pleased and gave us the green light to be discharged.

It was kind of scary to know that we would soon be going home, away from the skilled people who had taken care of Sahara for so long. But we are so blessed to have our great doctors and nurses here in Cape - I know that if she needs help, it’s only a phone call away. That is such a great relief!

Gobble, gobble, goblin

2007-10-31T05:36:00.000-05:00

Happy Halloween! I'm dressing up as Pamela the Pirate Princess...corporate style, which means I'll slip on my tiara and eyepatch whenever the fun people come around. If you're trick or treating in my neighborhood, we've got Skittles aplenty. Argh!

There's some very good news from the Good Ship Sahara. But wicked tease that I am, I'm not going to spill the jelly beans just yet. I will tell you that she's had an especially rough week, though, so let's give her and Amy a bit of time to gather their energy. Sahara's therapy is a super-high intensity workout with many facets, and she's going at it like an athlete--but that doesn't leave much time for anything else.

If you indulge tonight, FLOSS!

Hot hot hot

2007-10-24T20:35:00.000-05:00

For all of you who may be worried that Sahara is in an area affected by the west coast fires, rest assured she is safe and sound.

My cold seems to be on its way out. I choked up a small lamb this morning and one of those old-fashioned croquet balls, but the stockholders of Kleenex and Ricola have gone back home, deflated. I've managed to sleep through the last couple of nights without the magical red liquid cough-silencer-bliss-inducer. Woohoo.

Nancy, feel free to give us that veggie chili recipe. I made chili with oodles of beans and beef last week. It's my version of chicken soup. Who needs penicillin when you've got cayenne?

Sacrifice the chicken already, would you?

2007-10-19T19:27:00.000-05:00

Greetings from the Fountain of Icky Chest Gunk. My entire office begged me to go home today and as I crawled to the parking lot, I swear I saw them wiping down the front door handles with disinfectant. I managed to have a big bowl of onion soup before retreating to my warm bed.

I promised you an update on the Wonderchild, and Amy was all too happy to oblige:

Hello everyone,

Time marches on here in Rehab World. I can't believe we are now in our fourth week! Sahara is still doing very well, in spite of fighting the fatigue that comes with changing medications combined with hard work. Some days she is so tired that she simply has to go back to bed and sleep; other days she gives 110% to her therapists all day long. She has such a wonderful group of therapists working with her - I am so happy with everything they've been doing. She is so much stronger, her skin is finally beginning to heal, and she is sitting up much straighter than she could before we got here.

Her hair is growing in quickly and so far it is straight, LOL. She hated her curly hair with a passion - that's why she had them shave it ALL off for the surgery!

On the down side...her audiology appointment this morning confirmed one of my fears. She has profound hearing loss in her left ear - likely it began with the chemo and was finalized by the surgery. Her right ear is in great shape, though, so thankfully she can function really well and handle normal conversation. They told me to hold off for a while before considering any kind of hearing aid, due to her age and the ever-so-slight possibility that it could improve with time and healing. But for now, when you talk to Sahara, be sure you are on her right side! :)

There are now three people on our floor under the age of 45 who have had strokes!!! What a wake up call this is. Seems like there are more and more younger people who are getting what we used to consider ailments of the elderly (but then again I also remember thinking that 40 was soooooo old.).

Shannon's visit was great and we had a lot of fun. It was so nice to go out for a meal together...you really take simple things for granted when you have constant access to them. We can't wait to get back home!! I'm going to do my very best to get some "normal" back in our lives, although I don't know if I really remember what normal is anymore.

We hope to be able to come home soon!

Love,
Amy

I want my mommy

2007-10-16T17:37:00.000-05:00

I have a cold. This is what happens to a teacher's spouse. They bring these things home and share them. Do they ever bring home cupcakes? No they do not. But they bring home viruses, plagues, and in some extreme cases, cooties.

If my sad, pathetic, wilted fingers are ever strong enough , and if my lungs ever allow me to take a deep breath again, then I will blow out the candles on my pity party cupcake and write you another Sahara tale. For now, I must practice my best imitation of a grouchy, fat, old bear.

Day by day

2007-10-11T03:58:00.000-05:00

Hi everyone,

Sahara had a rotten day yesterday. I guess she had earned a day off, all things considered! Coming off decadron is one of the hardest things she's had to face. She woke up with a bright red face and a headache, and was so lethargic she could barely keep her head up. We ended up cancelling her therapies and letting her sleep, because she simply couldn't function. They upped her hydrocortisone, which helped tremendously, and she's soooo much better today. She did some serious standing and stretching this afternoon.

Poor kid...now she's also having to face skin tears. It's a blessing that she's moving, but her skin is so fragile from the evil steroid - it's like tissue paper. She has bandages all over! At the rate she's going, she'll be fully costumed as a mummy by halloween. LOL.

Last night we put up the artwork her cousins worked so hard making! Thanks to Carson, Elise, Claire, Evan and Cole - you really brightened up her boring walls. She loved the jokes, too!!!

To Evelyn and Comer: Shannon wanted me to tell you that your package arrived. :) Sahara's going crazy wondering what's in that big box. LOL. Thank you!!!

Shannon should be here soon and it's going to be great to have him back. We hope to enjoy a great weekend together. He's looking forward to meeting the therapists who are working so hard to get Sahara back on her feet.

Thanks to everyone who continues to post...we enjoy reading them so much!

Love,
Amy

Popeye the sailor man (toot toot)

2007-10-08T03:28:00.000-05:00

Hello, everyone,

I'm going to send Pamela a photo of the area I am using for internet access...it'll give all of you a laugh. The one computer in the area is in high demand (brings back memories of the Ronald McDonald House in Houston!), so my time online is very limited. There are also firewalls out the yang, so I can't even do work-related things here. Sigh.

Anyway, things are going so well with Sahara and her rehab. She's working very hard and has impressed all of the doctors and therapists with her great attitude and willing spirit. She does whatever they ask of her, even if it hurts her poor body to do so. The stretches, the movements, all of the exercises and activities...she is so tired at the end of the day. Most of the time she's asleep by 8 or 8:30 at night. They keep her very busy.

She's started "school" here, also. It's great, because the teacher comes to our room! He's a really nice guy and Sahara likes him. He told me that she's the most agreeable student he's ever had - LOL. She's working on math and literature, so hopefully she'll stay on track with her classmates back in Cape. It's our goal to have her back in school just as soon as she can handle it. She misses everyone so much and really wants to get some "normal" back into her life.

This weekend we were treated to a fantastic outing, courtesy of the hospital and the US Coast Guard. We got to go out in a high-tech cutter, which was amazing. Took a nice cruise on a beautiful, sunny afternoon, had lunch on the boat, and got to see an air show that was out of this world. One of the sailors had to lift Sahara a couple of times to get her where she needed to be...she named him Popeye. The man had muscles on top of his muscles, and was truly Popeye the Sailor Man. LOL. It was a great way to spend the day and we had a great time. I was so glad she felt like going on the trip. She was so excited to get out of the confines of the hospital for a day!

Lots of hard work ahead this week...she's no doubt going to be pushed to the limit more and more as the days pass and she continues to gain strength and muscle control. Her legs are so much stronger I can't believe it. I'm just praying for the day that she can take some steps on her own. I've already seen it almost happen - they put her in a sling of sorts, and she took about 15 steps on the treadmill. She was suspended, but was bearing the weight and taking the steps on her own. I could see the pain on her face...it was killing me...but she kept going. I was so very proud of her!

The best news for today is that it's the LAST day of taking Decadron! She's tapering off now on hydrocortisone, and should be done with that by December if all goes well. Praise the Lord, the steroids are going away. She is SOOOO happy about that!

I'll post again when I can, and hope to have even better news as time marches on. Have a great week!!

Love,
Amy

Over the ocean

2007-10-07T04:56:00.000-05:00

Our west coast girls are fine. I talked to Amy briefly last evening and we've scheduled a call for today, so I'll get you the full scoop on Sahara's progress soon.

They had one adventure this week--the hospital hired a bus company to bring several pediatric patients to the ocean, where a boat picked them up and sailed them past the sights on a cool, windy afternoon. How fun is that? Let me tell you, when I had my tonsils out in 1966, the big kahuna was the orange sherbet...not anything breathtaking like a ride on the ocean. I want a refund.

Life goes on

2007-10-04T22:37:00.000-05:00

Cell phone service off the coast of Argentina...oh, I mean Ecuador...no, come on, we all know they're in a remote cabin on the Baja peninsula, filming a reality show. Mmm, yeah.

Anyway, getting to the point, cell phone reception is sketchy at best, and internet access is even worse. At one point, Amy was holed up in a cafeteria, hidden behind a bunch of broken wheelchairs and bedpans, typing with a fork to get word out to us.

I'm betting on the obvious: Sahara is diligently working her tail off. Amy's scrounging tinfoil to make a proper antenna. And I'm sure we'll have an official update this weekend.

Chasing thunder

2007-09-29T20:18:00.000-05:00

It takes one heck of a man to share his 23rd anniversary message to his wife with the world. But since Shannon's at home with the sweet tea and good barbecue and Amy is in Haw--I mean Ore--I mean Namibia, yeah that's it, with Brad and Angelina...I'm working a little electronic magic tonight and sharing his words with all of you.

On the count of three, 1, 2, 3, ahhhhh.

For all his macho, sports-loving exterior, I do believe the man is a softie at heart.

For the past 15 months, we have been chasing thunder, until about three weeks ago, when we finally caught up to it. Since then things have started getting better. Every day in rehab, Sahara does something she couldn't do the day before.

Today, on our 23rd anniversary, she walked...for the first time in nine months. It took a lot of help, but she did it. She remains strong in spite of everything she's been through and she is still able to push herself to keep going. It's amazing to see the fight and determination still alive in her after all this time.

In my eyes, anniversaries are more important than birthdays or holidays. That's what makes it so hard to be apart for the second anniversary in a row. It's been nearly 25 years since the first time I kissed Amy. It was just like in the movies. My legs went weak, my stomach turned and I saw fireworks. And I knew it was true love. But I had no idea at that time how strong a woman she is. She is the strongest person I've ever met in my life, and she is truly the love of my life. Happy Anniversary...next year we'll hopefully be able to do something really special.

Love,
Shannon

Even the dogs love Sahara

2007-09-28T18:24:00.000-05:00

Part of Sahara's treatment includes checking dogs for bad breath. Oh, all right. We've got the giggles a bit today. Giggles are good! This is L, a "magnificent" therapy dog, according to Amy, who met Sahara and immediately fell madly in love.

For those of you surprised by Sahara's close trim, no, she did not join the Marines, and no, she's not on chemo. The surgeon needed to shave part of her head to get at the tumor, so Sahara ordered him to shave it all off. She's hoping that the new hair that grows back is soft and bouncy, instead of the post-chemo hair that was dark and wiry.

I'm hoping she'll be a redhead! All that independence and spunk would be perfect with fiery tresses. What do you think?

The magical mystery tour

2007-09-27T23:43:00.001-05:00

You would not believe the stories that are flying about Sahara. For example:

You know that story about Sahara and her family going to Hawaii for a long family vacation when all this is over? Um, ALOHA, people...she's already there! And they replaced part of her brain with a pineapple!
Sahara has been in a coma for five days. Now seriously, people: can you imagine Sahara being quiet for even five minutes? Trust me; she is wide awake and not lying there waiting for some prince to wander in and smooch her into oblivion.
Sahara is working in a Starbucks in Seattle, inventing teen-friendly chilled coffee drinks, and taking the pennies from the tip jar to contribute to brainstem tumor research.
Amy has charmed all of the nurses into obeying her every command and they now take turns bringing gallon containers of sweet tea to the hospital...which they serve to her in a Tiffany highball glass, with no ice. And afterwards, the hospital's trained therapy chimpanzee brushes her teeth. This makes Sahara giggle.
Dr. Noah Drake observed Sahara's surgery personally and the neurosurgeon let him tie two sutures on the back of her head.
Mrs. Hecht has taken up kickboxing and has threatened to "go medieval" on anyone who picks on Sahara...oh wait. That one is true.

People...as I said last weekend, please.

Here's the mini-scoop, straight from Amy, who was doing laundry tonight. Sahara is doing great in rehab. She's remastering lost skills--she's standing with a walker, pulling herself up to sit, enjoying long showers...and get this! This afternoon, she wheeled herself across the room to get gummy bears.

Amy and I talked about her attitude and determination, and tonight, we'd like to thank every single person who ever coached this child. She's facing rehab like a champion athlete who trusts her coach implicitly. No pity, no whining, just a total commitment to making her body work again.

Once again, kicking ass. And we love her for it.

Mama bear roars... and gentle requests for your prayers

2007-09-23T12:10:00.000-05:00

Amy and I are clearly sisters from another life. As I was bellowing on the site early this morning, she was sending me this message for all of you. I know it may seem harsh and that people mean well. But it is critically important that everyone do the right thing here.

I've got two people I want to recognize here: first, the jackass who is sending hundreds of spam emails from this site. May you rot. And second, the fool who started the email chains claiming she knows where Sahara is... and sharing that misinformation. The stinkeye for you.

One last thing: during Sahara's journey, we've become aware of so many kids who are fighting brainstem tumors. One of them, a darling little girl from southeast Missouri named Brooke Williams, lost her battle yesterday morning. Brooke's mom was sweet enough to keep Sahara in her prayers and even posted here when Sahara had surgery. For those of you who have a moment, please stop by this family's site and leave a note of support. The website is: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=brooke1

Thanks, everyone. Here's Amy!

Hello everyone,

I feel I need to address something...there's some misinformation floating around (again). First of all, we're still asking that folks respect our privacy for the time being as we work our way through this journey. We're not ready to divulge everything yet, but we eventually will, I'm sure.

However, I want to let you all know that we are NOT in LA, and that Dr. Lazareff did NOT perform Sahara's surgery. As we have mentioned before, if you don't see it here on the blog or hear it directly from Shannon or me, you may or may not be getting factual information. Our only family representative, if you will, is Pamela. So please, realize that if you don't get it from the blog or from the Aldridges, it may not be accurate. It is very frustrating to us when this happens.

Our hearts go out to the family of Brooke Williams in Perryville, MO. If you have an opportunity to support this family, please do...they lost their beautiful daughter Saturday morning to a DIPG brain tumor, which is what Sahara was diagnosed as having initially. Little Brooke no longer suffers, but her family will never be the same. Please lift them up in prayer.

I "officially" met a really sweet gal today. She's from Memphis and understands my sweet tea addiction. :) It's so funny...we've said hi in passing and given each other the knowing smile that parents give each other when their kids are in surgery or in the ICU. Yesterday she posted on our blog, and today I went back to the PICU and had a real conversation with her. I knew it was her even before I saw her sitting there...beside her precious little 4 month old girl.

You see, Macy had surgery the same day as Sahara, only hers was open heart surgery. This little angel has been hospitalized for 3 1/2 months of her short life. So if you don't mind, and have an extra moment, I'd like to ask for the magnificent prayer chain we have for Sahara to offer up some words for this little girl. She deserves the opportunity to grow up and have a wonderful life...just like so many others we know. All of our children need constant prayer. Thank you. :)

On the recovery front...we're moving right along and Sahara's doing better each day! Today was tough at first, though. Shannon flew home early Saturday morning. Sahara just bawled when he left - first time she's cried in ages. That was hard to watch, but she got better as the day progressed. He made it home safe and sound. It's so weird without him here...we've all become this solid unit, working together side by side in all we do. We miss him and can't wait for the day we can go home.

Last night Shannon and I went out for our anniversary dinner. It's not technically until the 29th, but he won't be here then. It's the second time we've spent our anniversary apart. We had a really nice meal at PF Chang's, and really enjoyed our little break. It was great. :)

The verdict is in about what comes next for Sahara. The words all parents of sick kids hate: watch and wait. We're going to get another MRI in in a few months to see what's going on. It is our hope that they got all of the bad cells...the ones that could cause this monster to start growing again. Maybe, just maybe, it will wither and die. But if it doesn't, they say at that point we can consider other treatment options. We just don't know at this point. Our doctor as well as the oncology doctors concur that they do not want to "overtreat" her at this point - they want to get her healthy again, get the weight off, get her off of the decadron...and get her walking again.

We like that plan. So for now, our focus is to thank GOD that she made it through the surgery, is healing incredibly fast, and is making improvements more quickly than anyone here can believe. Next stop: rehab!

On Monday, Sahara will begin a hard core neuro rehab program. They are telling us that with the strides she has made in healing that they see no reason that she shouldn't be able to walk again! We are so excited for her, and she's starting to have more hope herself. I can only imagine what's it's like to feel as she does...when so many things have been taken away from her, it must be so difficult for her to believe that she can get them back. We're trying to get her to set some goals...she says she wants to to to the mall with her friends, play in the yard with the dogs, and walk off the airplane when we eventually go home.

What happy days those will be...today they are lofty goals, but in a few weeks' time, I bet this girl will reach them.

Today was a first for us...it was the first time the two of us have ventured out by ourselves to explore the hospital. I took her for a long ride in the wheelchair and she really enjoyed it. Today the hospital...someday, HAWAII!!! (That's one of our future plans...a long family vacation in Hawaii. :)

That's about it for now. This week should get really interesting, so I'm looking forward to posting more good things soon. Thank you all for your continued thoughts and prayers; we appreciate them now more than ever!

With love,

Amy

People, PLEASE

2007-09-23T00:19:00.000-05:00

I don't have children of my own, but writing for Sahara has brought out the natural mother-bear instinct inside of me. There are so many facets to her healing, and her parents and health care team bend over backwards to keep everything moving in the right direction.

As we posted just a few days ago, keeping Sahara's location private is critically important. There are reasons for this I am not going to explain. You've trusted me (and them) all along; I need you to trust me here. It benefits her healing process. Period. When the time is right, we will tell where she was, because the surgeon, the facility, and the people who've been caring for the entire family ALL deserve the highest praise.

So here's the deal in plain English, again. If you know, or think you know, where Sahara is, keep the secret. Don't talk about it, and for goodness' sake, don't post it in a comment on this blog.

To everyone else, thanks for your love, support, and prayers. People have stepped forward with extraordinary kindnesses both here and privately, and Amy is so, so grateful. It really does mean the world.

2007-09-20T22:50:00.000-05:00

Oops! I promised to give you a link to information about Ganglioglioma, and I didn't. So, for those of you who are curious about Sahara's Mighty Morphin Tumor, here's a clean and simple explanation: http://www.childrenshospital.org/az/Site938/mainpageS938P0.html

The weekend can't come too soon this week. I've got a couple of new books to devour, and I'm hoping Amy will head out to the parking lot with her tin foil antenna and Rick Springfield secret decoder ring so I can call her up and get the latest scoop on Sahara.

Last night I dreamed I was watching her running on a country road, her stride steady, her hair pulled back in a pony tail, the corn stalks rustling as she moved past. And then she saw me, slowed down, and pulled a little scissors from inside her jersey. "I don't need this anymore," Sahara said, barely out of breath. Her eyes were clear and bright. And with a flash of silver, she snipped her orange bracelet off her wrist and kept running.

It's funny how the world changes, isn't it? In less than 10 days, we've gone from hope to belief. It's a glorious distinction. I have a feeling that over the next few months, we'll discover many, many more reasons to believe.

Stand and deliver

2007-09-19T07:08:00.000-05:00

Wow! As you'll see below, it's all good news, and now the tumor has an official name. It's a mouthful, but I say we "gang" up on it and stomp it into mush. I've got a good page with clear information on this type of tumor; I'll post it tonight because right now, I need to jump in my Beetle and head to work. Happy Wednesday!

Hello, everyone,

After waiting for so long for a room to open up, tonight we got lucky. We're now in a semi-private room, much to Sahara's chagrin, but at least we're out of the the ICU. I seriously don't know how nurses do it...so many things going on, so many different patients with different needs. Arrrghhhh...I'd lose my mind. Thank God for NURSES!

We got the final word on pathology today. Sahara has a ganglioglioma with anaplastic features. What a mouthful that is. It is a grade 2 tumor. Although we were hoping it was a lump of dead nothingness, it's still FAR better than the grade 4 diagnosis she was given originally. Normally, a ganglioglioma is a grade 1 tumor, but in Sahara's quest to be different, hers has every type of cell imaginable floating around in it. Dead cells, slowly dividing cells, and rapidly dividing cells. The presence of these bumps it up to grade 2. We are hoping to have a new plan of action in place by the end of the week; a lot of work has to be done to figure out what will serve her best. We're also going to be working on getting Sahara into an intensive pediatric rehab program. Lots and lots to do, that's for sure.

In the meantime, she's doing so well it's almost too scary to type it. Today she was sitting up, standing with help, and was able to get out of bed and sit in the wheelchair for a while (with assistance). PT and OT are working with her each day and they are really great. They had her washing her face and brushing her teeth this afternoon, which she hasn't been able to do in ages. I've done that for her for so long. The PT told her today that she definitely has enough strength in her legs to be able to walk again. WOO HOOOO! That really brightened her day. I can't wait until she gets into some serious therapy again...I think it is going to work wonders.

Sahara wasn't wild about this evening's dinner selection (baked cod), so I smuggled in some S'mores Pop Tarts for a late snack. LOL. She LOVED them and ate every crumb. (The docs are all so pleased with the fact that she's been eating basically whatever she wants since two days post-op!)

I'm excited because I now have a bed to sleep on and can sleep in my jammies. Oh, the great small pleasures of life. LOL. Sahara's excited because they removed one of her IV's, and she's not hooked up to as many monitors anymore. We had one in the ICU that beeped connnnnnstantly. EEEEE. Tonight should be a much better night of sleep.

Shannon and I are lucky to have had the opportunity to get out at least once a day and have a meal together. It's always at some weird hour, either early or late, but it's nice to get outside the hospital walls for a while. It's kept us sane.

The last couple of weeks have been a complete whirlwind. So much has changed, and so far, all of it has been for the better. We miss home so much, but we are really in a great place and Sahara is getting the very best care. That's the number one thing.

Our cell phone reception is pretty lousy here, unfortunately, so if we have missed your call or owe you a call, please be patient with us. Basically, you have to go out into the parking lot, stand in the middle on one foot, cross your eyes and hold up your arms to form a human antenna in order to make a phone call. LOL.

Sahara's snoozing peacefully beside me, and all is quiet around here. Her roommate at the present time is much younger, but he's sleeping too. They try to put kids near the same age together in the rooms, but sometimes it's not possible. This floor is dedicated to kids who have had neurosurgery, so it's a specialized group.

Shannon's gone back to the room this evening, and we'll trade shifts sometime tomorrow morning. It's worked out really well. I've always been the night owl so it doesn't bother me to be here. When he comes in, I'm able to go take a nap and catch up on anything that needs to be done, etc. We hook up again in the afternoon, and hang out with Sahara until we can find that moment to get out for a bit. We're always here for the doctor's rounds and to help her with her meals. The system seems to be working so far. :)

So, another good day for sweet Sahara. Time to catch a few zzzz's while she sleeps!

Love,

Amy

You give me fever

2007-09-17T06:04:00.000-05:00

Good morning and happy Monday,

It's 7 am and I'm watching the neighborhood kids walk to the bus stop (the blog is on Missouri time, but I'm on the East Coast so it's really an hour later here). Two things strike me: how many of the middle and high school students are accompanied by their mothers...and how healthy and agile the girls are. They bounce as they walk. Now and then, they run back home to get something, while their mothers wait in a cluster on the sidewalk, tapping their feet and agitated.

I see them and I think, If you only knew.

Hello, everyone!

Sahara continues to improve each day. This should be her last night in the ICU...we were supposed to get out yesterday, but there were no beds available yet! She also had a very low grade fever, so it's probably just as well that we stayed here. Just in case. Other than that, she's eating well and says she feels stronger. This evening she enjoyed a Pacific salmon filet (nice menu here...LOL). She hasn't been coughing as much, which is great. The cough she's had for the last month has been driving her bonkers. It's incredibly frustrating to try to eat as you cough every 10 seconds.

Although we've been stuck in the ICU since Wednesday night, the environment here is such that it keeps the stress level surprisingly low. We have had really nice people helping us every day. Anything Sahara has needed has been taken care of immediately, and they have been so helpful to Shannon and me as well. We've made some great new friends because everyone is so kind and eager to help.

At least we have the Disney channel and ESPN in here, thank goodness. Shannon got a few looks today because he wore his Titans jersey. You can tell that we're a LONG way from home on game day. LOL.

My only complaint about this experience so far? There is NO SWEET TEA here. None. Nada. Nowhere. ARRRGHHHHH...I've been addicted to McDonalds' sweet tea ever since they introduced it earlier this year. The hospital cafeteria sells Snapple Peach Tea, so I'm surviving on that! Must....have.....tea.....fading.......fast......eeeek.

Hopefully by the time I update the blog again we will be in our own room. Oh, what a happy day that will be. LOL.

Have a great week!

Love,

Amy

High voltage

2007-09-15T04:37:00.000-05:00

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

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

Hello, everyone!

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

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

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

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

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

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

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

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

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

With love and SO much hope,
Amy

Up up and away

2007-09-13T19:14:00.000-05:00

More good news: this morning's MRI showed the surgeon got 70% of the tumor out of Sahara's brain yesterday. 70% of ugly tumor has officially been kicked out...and the balance? It's a scared little bit of wee-wee tumor.

Sahara continues to do beautifully. Her labs are all excellent. She's still on the ventilator, which is perfectly normal, considering how traumatic this sort of surgery is to the body.

So far, she's handling everything like a champ. No 3-point shots just yet, but she did have several victories today.

She blinked on command.
She responded to questions.
She wiggled all 10 toes.
She wiggled all 10 fingers.
She accepted one dose of morphine, and refused all other pain meds.

After brain surgery, every last one of these is miraculous. And yet, I have no doubt that if Sahara were here, she'd grin and give us all a look like "Well, what did you expect?"

Amy and Shannon are doing well, too. They love the warmth of the hospital staff, and are especially impressed by some of the parent-friendly services, including complimentary Starbucks. And massages. Despite those goodies, I know they miss home, and everyone there. But they know we're all right here, cheering every little step that brings Sahara back to health.

Joy to the world

2007-09-12T19:14:00.000-05:00

She's out of surgery...and the surgeon came out smiling. And, I might add, wearing an orange swirl bracelet!

They got a LOT of that nasty tumor out of Sahara's pretty head today. She did beautifully--her blood pressure was steady throughout, and although she's still on a ventilator, her lungs are strong and healthy.

Amy and Shannon (and I) are overjoyed. They haven't seen her yet--she was on her way to the ICU. She probably won't wake up until tomorrow sometime, but all the rest is exactly what she'll need to heal.

Ugly tumor is being tested in the lab, but they confirmed it is not a glioblastoma.

Over the next few days, Sahara will have another MRI to determine just how much tumor is left--and how to make it shrivel up and die.

But for now, this is the best possible news in the world. Tonight, when you say your prayers, thank God.

Pins and needles

2007-09-12T16:28:00.000-05:00

I just talked with Amy. Sahara is still in surgery, and it's all going well. It will be several more hours before the doctors are finished.

Amy sounds great--and she is so touched by the fact that so many are praying, wishing, and hoping that this procedure will be the miracle Sahara deserves. I promised her we'd keep it up.

Sahara has completely enjoyed the last few days--not only did she get to feast on P F Changs, but she finally got what she's been craving since she started her healthy low sodium cancer-kicking diet: bologna. And she loved every bite.

I just love her capacity for joy.

I will share the news as it comes in. For now, keep praying. And eat your bologna.

Everybody hang on tight...we're going in!

2007-09-09T12:42:00.000-05:00

This is probably the second best post I'm going to put on this blog...and with any luck, it's going to lead to the best one very soon. You all know we've lived through bumps and miracles along the journey, but right now, we are breathless with hope and excitement. I'll let Amy reveal everything below, but first, a couple of things from me:

If you know where the Aldridge family is, please do not mention that in any blog comments. We are creating a circle of absolute privacy around them for a while.

Thank you for all the thoughtful comments about accessible parking--one by one, we can change our own communities...and yes, that WAS my little brother popping in. Hey Davy! Want us to send a little karma to your foot?

And, finally, thanks for the prayers for Greg. He's doing much better and was very moved that Sahara's devotees added him to their Godtalks. I'm going to keep the focus here on Sahara, but tell you what: on the 24th of each month (because Greg also shares a 24 birthday!) if you feel so inclined, ask God to help him heal.

Now, keep your arms and legs inside the vehicle, and please secure small items, because the ride is about to take off. Hold on!

Hello everyone,

By the time many of you read this, we will be well on our way to the west coast, where we will begin the next chapter of Sahara's journey. After searching for what seemed like an eternity, we finally found the surgeon we've been looking for...the one who is going to take that evil tumor out of our sweet girl's head.

Her surgery will take place on Wednesday, September 12.

We would like to ask for your strongest prayers- for Sahara, for the surgeon and his team, and for Shannon and me, that we'll all make it through this together. We're nervous, but so excited. After being told for over a year that her tumor was inoperable, this surgeon is confident that he can get most or all of it out.

He agrees with me...this tumor has not behaved like a typical GBM, which grows and spreads in a rampant fashion. It is contained and has defined edges that are visible on the MRI's. He believes it could be a lower-grade astrocytoma. And I think he's right.

He has a great deal of experience with brainstem tumors, and has saved the lives of literally hundreds of children who have come to him with tumors of all types. We are so lucky to have found him, and are so blessed that he worked us into his schedule this week. He's a real go-getter!

For the time being, we would like to keep our location private. We will be spending all of our time together until Sahara goes into surgery, and focusing all of our energy on taking the very best care of her that we possibly can. I'll post when I can and try to keep all of you informed.

We appreciate your love and prayers so much...thank you for everything you continue to do for us. It means the world.

Special thanks to Cindy and Gunnar...the pizza was fantastic! Sahara hasn't taken off her Livestrong bracelet. And Jennifer, Sahara enjoyed those cheesesticks so much! Tina - we had Outback takeout tonight for our last meal at home! Thank you! Jill, the cupcakes were delicious!! Brenda, thanks for everything you brought us!

(We stopped Sahara's IV treatment after we found out she was having surgery...so she's been able to eat some "real food," as she calls it! LOLOL!)

Caroline, Lexi and Morgan - I'm so glad you came by today. The platter is beautiful and SO special. Sahara was soooo happy to see you all. :)

So that's all for now, folks. Our greatest hope is that after the surgery, Sahara's able to start rehabilitation and get her life back. She wants so badly to go back to school and be with her friends. Pray, pray, pray.

With love and HOPE!

Amy

Just a minute

2007-09-06T05:52:00.000-05:00

Sahara, Amy, Shannon, and their collection of critters are all doing well...very well. And next week, with the Jewish New Year, we may have more to tell...

Don't you LOVE a good mystery?

Now that I've got you all interested, I'm going to lecture, beg, and tap dance for a moment so that all you soldiers in Army Aldridge can conquer a problem in your part of the world. As you know, Sahara uses a wheelchair (a very funky red one!) to get around her world. Her parents have handicapped parking permits for when they're driving her to important places like Target. Or the mall. Those up-front, wider spaces not only make it easier to take people with disabilities where they want to go, they often make it possible.

Unfortunately, in this season of busy-busy back-to-school, some people without permits feel justified in parking in those spots, because they have a million excuses: I have the kids! It was only a minute! There's no one handicapped who needs them! There was no other parking!

None of those are valid. I got into a virtual shouting match with someone yesterday who gave all those excuses because her car was towed and she had to pay a $108 ticket, and she lost her cool in front of her kids, screaming and cursing at the store and the tow truck driver.

To my shock, many people defended her reaction. I tried being nice and asking her to imagine what it would be like to not only have all those excuses, but be in a wheelchair, or on crutches, or unable to walk far... and now not be able to go to the store at all.

She didn't get it, and that makes me mad, and sad. My old boss used to tell me "You can't get into a pissing battle with a skunk." I guess so... but I can gently remind the world that doing the right thing can remove so many obstacles for those of us who have challenges.

So today and always--even if it's raining or icy or there are 50 spots for people with disabilities and you're going to have to walk 300 feet with 12 kids, all of whom are hungry and have 67-item school supply lists and no shoes--don't park in the accessible spots without the permit. Please.

Army Aldridge

2007-08-27T21:52:00.000-05:00

In case you haven't heard, Sahara made the front page of the Southeast Missorian this morning, complete with several photos from her party last month, and a living room shot showing just who rules the recliner in that household. HA! One of the photos credits "Army Aldridge" and while the editor in me wants to scribble in red pen on the computer screen, it's actually right.

We're all members of Army Aldridge, aren't we? This is a battle, and all of us are marching, fighting, and blasting at that tumor with the power of our love. One of these days, we're going to crack it.

If you'd like to read the articles, jump over to http://www.semissourian.com/story/1249299.html
or http://www.semissourian.com/story/1249305.html.

Mr. Springfield takes the cake

2007-08-23T06:13:00.000-05:00

Hello, everyone,

What a month this has been.

It's a good thing we had our Tunica trip to temper all of the other crap. Sahara's really been put through the wringer these last few days/weeks.

We had to have a CT scan to make sure her shunt was working properly (it is). Her blood pressure has been raging, and after trying three different medications, we are finally seeing some improvement.

But then came the MRI. The tumor has grown a bit, and it completely bowled us over. I'd had my suspicions about it, and had noticed subtle changes in her, especially in recent weeks.

To actually hear something other than "stable" was such a shock. We told Sahara, and she was so calm...I don't know how she does it. She thanked us for telling her. Can you believe that???

Anyway, her medicine dosage has been raised, and hopefully we'll fight off any further progression. It stopped it once before, and with luck it'll stop it again.

We had to lower her dosage when she was sick in April, and we had not gotten it back up to the max since then. When she first started treatment, she was so tolerant of it that she reached the max very quickly...and it apparently stopped the tumor in its tracks, making it stable ever since January.

We need your prayers that her body will be able to tolerate the high dosage once more.

So, for the last few days, I've been in a real funk. An angry, frustrated, debilitating funk that left me not wanting to talk to anyone or deal with anything in cancerland. But I'm coming out of it. Shannon and I are more determined than ever... and we've got some things on the back burner. Just in case.

Thanks to everyone for your continued love and prayers. We couldn't get through this without you. Just keep on praying... maybe a little harder this week if you can.

On a brighter note, today is Rick's birthday, so everybody needs to watch GH in his honor. On Friday, he sings on the show for the first time ever. How cool is that???

With love,
Amy

Still

2007-08-22T19:27:00.000-05:00

Hey, Sahara fans...we're all still here. Thank you to everyone who sent good thoughts and prayers for Greg. He was very touched. He's doing better, and went home from the hospital late last week. I don't know what made him more excited--taking a long hot bath, or having locally grown corn and tomatoes for lunch that afternoon. Either way, he enjoyed the blessings.

He's got a long road ahead of him, but he's surrounded with love, and I'm not about to let him check out early. So keep the vibes flowing.

Sahara's days ebb and flow. As much as we can rejoice in the miracles she's had over the past 13 months, we have to remember that she, and her parents, are engaged in a tougher battle than anyone can imagine. It's hard, hard work. It's exhausting, and sometimes they just need some quiet time to regroup. So we're giving them that. Just keep your prayers strong and steady...and keep believing that more miracles are just around the corner. No one deserves them more.

What a girl wants, what a girl needs

2007-08-13T05:20:00.000-05:00

Hi ho, hi ho, it's off to work I...oops, you caught me. My vacation is officially over and I'm heading back to the office in just a few hours. It's been a very full week. Highs, lows, three novels, a giant lobster, and catching up on sleep. And, since Thursday, a double dose of prayers--A, for Sahara, who set a goal, and as you'll see below, achieved it...and B, for my best friend of more than 20 years, who found out this week that he's very sick. We're all reeling...but after the initial shock, I'm shifting into the "Follow Sahara's lead" mode. If she can kick it, so can he.

At any rate, if all of you would trust me on this and add Greg to your prayer/karma/wish list, who knows what might happen. This year, I've learned to believe in miracles, so why not again?

And speaking of miracles...

Hello, everyone!

Saturday morning, Sahara woke up at 6:30 am, and said, "Mom, I feel good today. Let's go to Tunica. I want to see Rick." I was floored...she had felt like crap all week and I truly didn't expect her to be able to go to a concert. I had to do a load of clothes and a million other things before we could leave! I hadn't packed to go anywhere other than the hospital since last year.

It was 12:30 before we finally hit the road. We had a perfectly wonderful trip, and for a moment it was just like old times.

We got to Sam's Town just as Rick was getting ready to go to soundcheck. I thought Sahara might want to rest for a while, but nooooo...she was ready for some fun. We went with Rick to the showroom, and all of the guys in the band were so glad to see her. We chatted for a while, then they had to get down to business. After they were finished, we went to dinner at Twain's, the steakhouse at Sam's Town. It was very nice, and we discovered that Sahara likes asparagus. Loves it, actually. I couldn't believe that she was eating it, but today she had me put it on the grocery list. She told me she thinks she's turning into a vegetarian. HA!

After we ate, we ran to our room to change. Sahara was so excited to dress up in one of the cool new tops that Pamela brought her from New York for her birthday. She looked great...and so happy. :)

We went back to the showroom and got our seats, which were to the far left, about the 6th row. I'd asked for a place that would be easy to get out of should she decide that she was ready to leave early. But in true Sahara fashion, she stayed for the entire show and loved every minute of it. Rick was fabulous as usual and really had the place rockin'.

Afterward, we said our almost-tearful goodbyes backstage. It was so good to see Rick and the band...what a terrific group of guys. It was so much fun. Sahara really needed this little trip.

After a decent night's sleep, we grabbed some breakfast before getting back on the road. Several folks came up to us this morning, all sporting Sahara bracelets, telling us that they are still praying and hoping for our miracle. It was really nice...there are so many sweet people out there rooting for Sahara, and we are grateful to all of them!

Our trip home was smooth as could be. I think we were both surprised that we were able to travel and take care of everything pretty much as we always do. It's amazing how we can adapt, isn't it?

Rhonda Hunt took these photos - doesn't she do great work? Thanks, Rhonda!!!

And after more requests than I can count, photos of the new bathroom are included for your viewing pleasure. LOL. A HUGE THANKS to everyone who attended the Milwaukee fundraiser! Love built this bathroom for Sahara!

Have a great week!

Love,
Amy

Mr. Ellis busts a move: the evidence in photographs

2007-08-10T18:09:00.000-05:00

Special thanks to Mrs. Hecht for these photos from Sahara's birthday party. And yes, we'll get to the bathroom photos eventually. We promise!

I felt the big beat

2007-08-09T06:55:00.000-05:00

Oh, Sahara! I have something for you. A certain rocking gentleman sent me home with a hug for you. If we could just bottle his energy and essence, you'd be cured in a heartbeat. I am convinced.

Rick put on a great show in Westbury, Long Island last night--as did his band--bringing the audience to its feet before he even walked into the room. We enjoyed every note--but especially when he sang the blues. Someone give that man a hound dog. Please. And yes, I can report that his Sahara wristband was viewable from all parts of the theatre.

As it should be. I had my eyes peeled for Rosie and Nancy. There was a Nancy doppelganger with Nancy hair but a different face. Alas, the Saharagirls stayed hidden all night. But I know they all had fun--and I know they all imagined Sahara and Gramma Dooley up on that stage, blaring it out. Don't talk to strangers!

Lazy, Hazy Summer

2007-08-07T18:47:00.000-05:00

I'm on vacation this week; the kind where one lolls around, reads silly novels, eats lots of gourmet popcorn (thank you!) and makes difficult decisions like, oh, asparagus or peas for dinner? Shall I have black beans or pinto beans in my salad? Hmmmm.

Tomorrow evening, I may just go to a concert, given that some tasty morsel with a string of hits happens to be performing a mere 5 minutes from my house. I'll keep my eyes open for you ladies from Saharaland. Please be kind and try not to laugh at my skunk-striped hair. Why waste a good swimming day in the salon?

Sahara, Amy, and Shannon are all doing well. Sahara had some things checked out last week and the docs said they're fine. She's hitting a bump with one of her meds at the moment, but it will get sorted out.

One more thing--that bathroom of hers? Gorgeous! Bright, cheery, filled with color and life. When this ordeal is over, the kid really ought to consider a career as a decorator. Kudos to her, to Grandpa Dooley, and to everyone who helped make it happen. Even the guy with the jackhammer. Y'all did good.

When you care enough to blog the very best

2007-08-01T06:48:00.000-05:00

Hello, everyone!

This is going to sound like a giant Hallmark card. First, an enormous thank you to EVERYBODY who attended Sahara's birthday party! We all had so much fun, and Sahara was so happy to see you all. I haven't had time to look over my photos yet, but Jen Hecht sent me some
really great shots that I plan on posting sometime this week. Sahara thanks you all for the cards, gift cards and money she received that night - she finally got that snowcone/slushie machine she's been eyeing all summer at Target. LOL. (Hmmm...bet it makes great dacquiris...but I digress...)

It was so great to have Pamela join us for the party! We were so honored to have her here, and I appreciate everyone making her feel welcome. I keep telling her that she and John need to just move here and get it over with. LOL. We had a super time visiting, sightseeing and shopping. Time just went by too quickly!

The decorations at the party were out of this world. Sheryl Henley and her mom, Linda Stroder, were the ones who transformed the Elks room into an underwater wonderland. I have had so many comments, calls and emails from people who were just amazed by how beautiful the place looked Friday night. Thank you, Sheryl and Linda...it meant the world to us. Thanks also to Donnie and Larry, their husbands, who had the strong backs and helped put everything in place. :)

Thanks to the Elks Club for your incredibly generous donation of the room...we never expected that! Thanks to Diamond Sound for the entertainment, it was a blast! Thanks to Jill B for the cookies and treats, and to Mike & Daryl and Johnny & Sandy for the chips and drinks!!!

Interesting observation...apparently the latest trend is for kids to rush to the dance floor when one of their favorite songs starts...and then they gather in a big circle pile and stand there chatting while the music plays. We kept thinking that they would burst into action. LOL. Gosh, if only that had been the fad back in the 80's, it would have saved me a lot of dance humiliation. Ha!

Sahara loved leading the "soul train" around the floor...it was so much fun to see her out there with her friends. As Pamela mentioned, hopefully she'll be dancing next year. I don't even care if it IS in a big circle pile. LOL.

I think that Sahara has the best friends in the world. So many of them came out Friday night, and we know a lot of them were there in spirit as well. I love and respect all of you so much, and you know who you are. :)

We had more nurses and teachers in one place than probably anywhere else on planet earth. That was the smartest and safest room in the tri-state region Friday night! It's a testimony to Sahara that so many of them were there - they all love her so much, and they have been right by our side since this journey began. We are so blessed!

Finally, today is Shannon's birthday. It's a far cry from how we spent last year's; we were boarding a plane, taking Sahara to Houston to begin the fight for her life. Happy Birthday, Shannon...you're the best dad a kid could ever ask for, and you're my rock. We love you!

Have a great week, and I'll post photos soon.

With love,
Amy

Wonders of the world

2007-07-30T22:42:00.000-05:00

I'm back from Missouri, where the ground actually steams after a summer rain...and the traffic lights sometimes get stuck with all three colors lit up at once. But I'll forgive them, because they have good barbecue and even better potato salad.

Sahara's party was lots of fun--and the guest of honor even got out on the dance floor, leading a train of her fans and encouraging her mother to shake her groove thing. One of the funniest moments of the night? Shannon and Amy were out on the floor, and Sahara caught them kissing...and grimaced like any other mortified teen.

There were kids, adults, a huge posse of nurses, teachers, friends, coworkers, hummingbirds, and even a curious doe, all there to check out the fuss and cheer Sahara on in her quest to conquer the world. Bless them all--and also the wonderful group of Sahara's friends who helped with invitations, addresses, party prep, and all the other tasks--even though they couldn't be there that night because they had camp or family obligations.

They were there in their hearts--and Sahara knew it. She had gorgeous flowers from the kids who couldn't be there (which proved to be much too tempting to her cat, Cleo). They are all an amazing bunch.

As for me, once I had a very long nap (because I am apparently old), I got to spend all day Saturday with Sahara and Amy. at their house, touring Cape and the surrounding countryside, and hitting the bullseye mecca: Target, where Sahara treated herself to a snowcone machine. Shannon was off in St. Louis enjoying a Cardinals/Brewers game, and so we were three relaxed girls together, hanging out.

I'm sure Amy will want to fill you in on everything shortly...so I'll just say it was good--and once again, people were charming, gracious, and welcoming. And yes, of course Gramma Dooley was there...along with Mrs. Hecht (and her adorable children), Q the basketball coach, and the infamous Mr. Ellis, who allowed Amy to drag him onto the dance floor and proceeded to give both me and Sahara the nose-snorting giggles.

The reality is that Sahara is still a very sick young lady--but her spirit (and sass) comes through loud and clear. Her eyes shine, and she pops off her trademark laugh when it's well-deserved. During the trivia portion of the evening, when the adults were struggling for answers, more than once, Sahara calmly called them out. And they were right. She's in there, people. Don't forget that for a second.

When you wish upon a starfish

2007-07-25T03:47:00.000-05:00

Thank you to everyone who sent good birthday wishes--watching them pile up yesterday was just wonderful. At work yesterday afternoon, while we were all gathered around a wickedly delicious black forest cake, someone asked about how I was celebrating and I mentioned how excited I was to be heading to Missouri to Sahara's party. The woman asked why, and I gave her the 15-second version of Sahara's year.

"What a tragedy," she said.

"No," I explained, "what a miracle. She's here with us...we're having a party!" I can't think of a better reason to celebrate.

Hello, everyone!
What a beautiful day we had...Sahara's 13th birthday. From start to finish, it was great. Everywhere we went, people gave good wishes to her, and it made her very happy. Special thanks to each and every one of you who sent cards, balloons, the gorgeous fruit, gifts and emails...you helped make this day a wonderful one!!!

Our house is so full of balloons that the cats are totally freaking out. LOL. And the SWEETS...WOW. So much good stuff to eat that I may just give up cooking for a couple of days and live on sugar alone. :) (Helaine, you reaaaally shouldn't have...but thank you!!!!!) And MORE thanks to Packy, Susan and Ally, we love you all!!!

We are so lucky to have great hospitals, doctors and nurses here in Cape. We do business with both Southeast and St. Francis, and everybody we deal with is so great. We visited both places today and were met with balloons, cards, candy, a cake from My Daddy's Cheesecake, and a giant vat of orange jello, which happens to be one of Sahara's favorite things. She claims that St. Francis makes the best jello on the planet. The staff knows she loves it, so they got her a BIG container of it...the look on Sahara's face was priceless. What a cool and fun thing to do!

Thanks to all of you for giving Sahara lots of smiles today!

We went to horseback riding tonight and it was great.They went riding around outside in the fields near the barn...it was a gorgeous afternoon and it felt so good to be out in the country. And they had cupcakes!!! We are going to miss riding so much these next few weeks, and can't wait until they start having lessons again at the end of August.

Sahara wanted hotdogs on the grill and macaroni and cheese for her birthday dinner. HA...and I have been lucky enough to find low sodium, all natural hotdogs.What a hoot. I make her mac & cheese with Swiss cheese, so that cuts down on the salt as well. I am now a boring authority on all things low-sodium, so I apologize who anyone who has the misfortune to have to listen to me. LOL.

Sahara's so excited about the party that she can't hardly stand it. I tried to send out as many invitations as I could by email, and a few through the regular mail, but I know I have missed some friends and teachers. So let me officially invite Sahara's wonderful classmates and teachers, from Alma Schrader, CMS, CJHS, Community Day and Christian School! And there's a certain favorite principal that she's hoping will make an appearance, and I don't have his phone number or email! Mr. Ellis, please come if you can!!!

Sahara's Under the Sea Birthday Party
Cape Elks Club, 6-10 pm, Friday night
No gifts please!

I wouldn't have gotten a fraction of this done if it hadn't been for Caroline, Maria and Ashlyn. Ladies, YOU ROCK, and I thank you so much for your help with names and email addresses!!!

Finally, I just have to say, "What a year." One year ago today we were faced with the awful truth and a grim prognosis. She was not expected to live to see her 13th birthday - and the fact that she DID makes my heart burst with joy and pride.

Sahara has taught me so much this past year...patience, diligence, how to keep fighting and NEVER, EVER give up. She is still able to laugh, joke, be sassy and smart alecky, and I am SO grateful. She gives Shannon such a hard time these days, and it is a riot.

I've been teased a lot about having a teenager now...about the rebellious tendencies and the gravitation towards random piercing and tattooing. LOL. I just laugh and say if she wants to get pierced or tattooed, we'll go with her and do the same. HA!! She can pretty much do anything she wants...because thank GOD, she is ALIVE!!!!

And we are thankful for each day that she continues to beat the odds. We are thankful for the prayers from all of YOU that have helped get us through some really dark days. Her birthday is, for us, another day of thanksgiving. And maybe, just maybe, next year she'll be free of this stupid tumor.

Thanks again to everyone for helping us celebrate!
With love,
Amy

Celebrations

2007-07-23T23:18:00.000-05:00

In New York, it is officially our birthday. In Missouri, Sahara's got about 40 minutes left to be a kid...and then she's a teenager. Sahara, so help me, if you ever pierce anything or get a tattoo, you are in big trouble!

As for big trouble, don't you think she's done an admirable job of kicking that tumor's ass all year? Just a year ago, the doctors were all serious and solemn and intent on scaring the bejesus out of all of us. Hey docs! Y'all didn't realize who you were dealing with, huh?

When I blew out the candles a year ago, I wished for what the docs said was impossible. I asked God and the birthday fairy to give Sahara another year. One year later, I'm convinced it was the coolest wish I ever received. Guess how many years I'll be wishing for THIS year?

Why don't you all join me? Sometime today, buy yourself a cupcake. Light a candle, make your wish for Sahara, and blow. Let's light up the sky with all our wishes.

Happy birthday, Gramma Dooley

2007-07-23T04:43:00.000-05:00

Given all the wonderful things you've been and done for Sahara, you are hereby officially declared a bona fide birthday triplet. The ceremony will have to wait until this weekend...it involves licking the frosting off a cupcake, a secret chant, and some other nonsense.

I think you're supposed to wear pink Crocs, too...but if you've got a note from your doctor, I can probably get you off the hook on that one.

Five days until the big celebration. I can hardly wait! (And yes, that means I'll be there!)

Still bouncing, but with glee

2007-07-20T06:19:00.000-05:00

After that Diet Coke fiasco, I managed to swear off caffeine for one whole day. I'm not a coffee drinker, but I do like my spot of tea--iced, of course, no sugar. Yesterday, I tried to do without, as I spent two days this week feeling as if my finger was duct-taped in an electric socket. Last night I had a small iced tea and am pleased to report that I didn't explode.

Now, I could continue to tease all of you about the big surprise, but...Amy has decided to throw back the giant curtain:

Hello everyone!
We're just coasting through the summer and loving each minute of it! Sahara continues to feel better, and she's so excited about her birthday next Tuesday. We are up to our eyeballs in birthday party plans, and it is SO wonderful...particularly since we were initially told that she might not make it to another birthday. They didn't realize what strength this girl has! :)

The biggest obstacle to doing birthday invitations is finding all of the addresses we need! I miss the days of the little directories we would get when she was in elementary school...they had all the contact information for all of the families. It made it so easy to reach the kids when an event was being planned.

We are going to attempt to send invitations to as many folks as we can and hope that we don't miss anyone. I may just post an invitation here on the blog! More details to come very soon.

The birthday blowout will be Friday, July 27th! Sahara did her horseback riding this evening and thoroughly enjoyed it as usual. We had some rain in the area and it really cooled down the barn, which was nice. There were three other kids riding during the time we were there, and every one of them was so happy. It's so obvious that this is an awesome therapy!!!

We're finally getting our house back in order after the construction. It is such a relief to have things put back in their places. LOL. I only have a couple of finishing touches to put on Sahara's bathroom, but she's done all of the design herself. It is SO pretty!I hope to post some photos this weekend.

I hope you're all making some time to enjoy these great summer days. It's my favorite time of the year. Have a great week!

With love,
Amy

Boing boing!

2007-07-17T20:11:00.001-05:00

Oh my goodness, I've had much too much Diet Coke today. I usually stick to water or tea, but today was hot, the burger was crispy, and the soda went down so nice and cold. Now I'm bouncing off the walls.

All's cool in Saharaland. And I've got a secret. Shhh! Those of you in the know, hush!

Nancy C, I can't believe you're going to be in Westbury--literally 5 minutes from my house--and we're going to be on vacation that week. I'm sure you and your daughter will have a grand time!

Boing, boing, boing, boing!

Full of beans

2007-07-10T21:54:00.000-05:00

It was 3 bajillion degrees in New York today, but I had an oreo malt with dinner and then went for a long swim. By the time I got in the pool, the water was warmer than the air. Delicious.

Hello, everyone!

Drumroll please...now a guitar solo...LOL...THE BATHROOM IS FINISHED!!! Grampa Dooley came over Saturday morning and did the last of the work, installing the trim and putting up the cabinet and mirror. It is absolutely beautiful - what a transformation! After we get all of the rugs, towels and a shower curtain picked out, I'll post some photos. :) A huge thanks to all of the great guys from Miller Drywall and Dutch Enterprises who did such a wonderful job, and to Grampa Dooley for coordinating the whole thing!!! Sahara loves it, and it is going to make her life a LOT easier. And we couldn't have done this without the incredible generosity of the Rickfans and the Milwaukee fundraiser. You all will never know how much we appreciate what you did, and how much you have helped Sahara!

Oh, and as an added treat, Grampa Dooley brought us something special...Gramma Dooley's Should-Be-World-Famous Ham and Beans and cornbread. They definitely lived up to their reputation - SO good! Thank you for sending those to us! We enjoyed them so much.

We can now congratulate Gramma Dooley for contributing to the official wardrobe of General Hospital. Rick asked me to send him some extra Sahara bracelets, because wardrobe needed them for his dual role as Eli Love that's now coming to light. They kept what they needed and Rick SOLD the rest! So now we have other cast members proudly sporting Hope for Hoops bracelets. Woo hoooo!!! (BTW, I personally think that GH should have Rick, oops, I mean ELI, sing some Sahara Snow songs...hmmmm....)

A special thank you to Michalle G - we truly appreciate your hard work on Sahara's behalf!!!

We managed to sneak in an MRI last week - and the tumor is still STABLE! And everybody said, "Amen."

WE ARE SO BLESSED!

With love,
Amy

Starry-eyed, and love is all around us

2007-07-03T05:32:00.000-05:00

There's a Rome apple tree just outside my window. It's still a bit spindly, but I've had it three years and each summer, I get a few more apples. The birds eye them beadily, and now and then, a brazen squirrel leaps into the branches, shaking the whole trembling tree, until I rap the window with a pen. This summer, I have a dozen blushed fruits, and as they grow, I've contemplated the pie I'm going to bake in a few months. I only need 7 or 8, so even if one goes bad or the squirrel outfoxes me while I'm at work, the potential is there.

But there's plenty of potential beyond cinnamon, sugar, and homegrown apples. I'm always telling people to watch for the miracles and messages. There are little gifts from God all over the place. Last week, when our sprinkler system went wonky and refused to shut off, a mother robin ran to the edge of the runaway spray and flitted, danced, and chirped (in appreciation, I think) as she enjoyed a cool bath on a humid afternoon. Yes, it was a crisis for us, and my husband was in a panic. But I saw the gift, and it was a treat. The sprinkler got fixed. Life went on.

And it will go on, even if I have to buy apples from a store, because one of the gifts this morning is a tiny yellow goldfinch, hopping from branch to branch and pecking away. Never mind that the echinacea I planted to attract him are finally in bloom. He's thrilled with my apples, and I'm thrilled with him.

Rest assured, I'm not turning this into a birdwatching blog. But I think there are gifts and lessons here for all of us. All over the world, and most recently, this weekend in southern Illinois, people have given Sahara, Amy, and Shannon the gift of unconditional love, along with hard-earned cash to help with Sahara's astronomical medical expenses. And while the money is so amazing and so appreciated, I'm willing to bet it's the gifts from your heart that stun them even more. At the very same time, every last one of us who follows Sahara's story, or goes to a pork chop benefit, or a Rick concert, or wears a swirly orange wristband--we've all been handed hundreds of gifts and miracles throughout the year.

Of course I wish Sahara had never developed this horrid tumor. But in the almost 12 months that I've known, the blessings have been coming like goldfinches in an apple tree. They make me believe.

Hello everyone!

Are you ready for this? The dinner/dance in Cairo Saturday night raised a whopping, unbelievable $10,000!!!! Between the pork chop dinners, the silent auction and the cash donations, it was the single largest fundraiser ever held at the Cairo Elks Club. It was beyond amazing! The place was jam-packed, and they even ran out of food, TWICE! We got to see so many people that we hadn't seen in such a long time, and there were so many people we didn't even know, who came out to support our sweet girl. God bless each and every one of you who attended - we were so honored to have you there. And to those who put this party together, wow. The food was delicious, the music was great, and the atmosphere was joyous.

A million thanks to Bobby Pace, the man who put this together and worked so hard to make it happen. He literally works seven days a week at Stop & Shop, making sure that the store has the best meat in the area, and he still managed to pull off the impossible! There are soooo many other people who were involved and helped so much...Jeff Berryhill, Stephanie Dixon, the Cairo Elks, Duke and Joanie Jones and Modern Woodmen of America Insurance, Ned Gunn and Bottom Line, all of the silent auction donors, everyone who sold raffle and dinner tickets, and everyone who helped in any way...THANK YOU. We are so grateful I can't even find the words.

When you see the people that you grew up with still standing beside you as you go through your life, it is the best feeling in the world. We are blessed with a small town history that has given us the best friends anyone could ask for...and we love you all.

Sahara was really overwhelmed by the night - she still can't get over how people come together for her. I don't think she grasps that she is so special that from the moment someone meets her, they never forget her. People can see that she is strong, they see the spark that somehow still burns bright in her eyes, and they see the love that she brings to everyone around her. I thank God for her EVERY DAY.

I hope you'll take a moment to check out the snapfish photo album and look at the fun we had Saturday night! (You don't have to be a snapfish member to see the photos; just click on the link!)

Have a great week!

With love,
Amy

The old nag

2007-07-01T00:28:00.000-05:00

Dear Grayson,

We know your name has come up in Sahara's blog comments quite a bit lately. Now for all of you thinking "pamela, you ninny, that horse can't read" I will just say one thing: hush.

Grayson is not the horse. Grayson is that wonderful lady who helps Sahara ride Candy. Candy is the horse. As far as I know, Candy doesn't read the blog.

At any rate, Grayson, we'll stop offering you sugar lumps, carrots, and fresh hay now. Will you accept a big virtual group hug and an enormous round of applause for what you've done for Sahara?

Best wishes,
pamela, Sahara's birthday twin

Sweet Caroline

2007-06-26T03:30:00.000-05:00

Hello, everyone!

Sahara has finally emerged from the shell she built around herself last winter. The last week has been filled with so much fun, and so much love. She continues to thoroughly enjoy horseback riding on Tuesdays with Grayson, and I think you'll be able to see from the photos that it's a mutual admiration society. LOL.

Last Friday night was a mega-milestone for Sahara, and it truly made my heart soar. Her friends Caroline and Morgan had a joint birthday party, held way out in the country at Caroline's grandmother's farm. It was so beautiful. From the moment she got the invitation to the party, Sahara couldn't wait. I was so happy that she was excited about going, and was so glad that she continued to feel well enough to go. When we pulled into the driveway, and I began to unload Sahara and her stuff, I could see the kids realizing who it was...they ran up to her and took her back into the wonderful fold that is her group of friends. These kids are the BEST, and I hugged as many as I could, thanking them for being so good to Sahara. They took her around in her wheelchair, we took pictures, they laughed and had fun. I chatted with the parents and tried not to cry. LOL. Ask any teacher who has had the fortune to have Sahara's class, and they will tell you that there is something so special about this particular group. They are so loving and caring and FUN. Thanks to all of you guys, and you know who you are. You made Sahara feel so good, so happy, and so glad to be out in public again. It took guts for her to come to the party, and you welcomed her with open arms. It meant the world to her. She was flying high all weekend. :)

We spend Sunday afternoon with Madison C. and her mom, Pam. These "normal" days feel so great!!! We grabbed some lunch at McAllisters and went...you guessed it...to Target. LOL. It was a fun summer day.

The bathroom is in the final stages, and we hope it will be done by the end of the week! It is looking fantastic. Sahara can't wait to have her own bathroom. LOL.

We are so excited about the big dinner/dance for Sahara in Cairo on Saturday night! Tickets have been selling fast and I think we may have a full house! If you can join us, please do. It's going to be a blast.

Enjoy the new photos and have a great week!

With love,
Amy

Songs in the key of life

2007-06-19T04:06:00.000-05:00

This is for all the Sahara fans...but especially for Gramma Dooley and Jen Hecht, who will enjoy this best of all. And yes, that girl IS holding a baby goat!

Relay for life

2007-06-18T07:22:00.000-05:00

Our star has agreed to photos--and they're adorable! I'm working on putting up a little album, so practice your patience. They're worth waiting for--I hope to have them for you tonight.

We had a such a nice, peaceful weekend, and I'm so grateful for that. Sahara did the Survivor's Walk (I mean, "ride") in the Relay for Life Friday night. It was beautiful...and next year I'm going to participate in a bigger way. I had no idea how touching it would be. I had tears in my eyes almost immediately, seeing all the survivors and walkers who were there raising money. It was held at Capaha Park, which is such a lovely, idyllic place, and it was a perfect, warm, summer evening.

Jen Hecht was sick, unfortunately, and we missed her! Her family was there, though, and it's always great to see them. :)

As we walked around the lagoon, my heart was so full...seeing all of the survivors in purple shirts, the luminarias along the sidewalk (I even found one of Sahara's! And I know it was Gramma Dooley's, because on the back it said, "Love to the moon and back!"), and watching Shannon push Sahara in her wheelchair.

It was a very emotional experience. Sahara really loved it and plans on WALKING next year! Thanks to everyone in our area who worked so hard to make it a truly amazing event.

Sahara asked to go shopping yesterday to get Shannon some Father's Day gifts. We had fun at the mall, and she picked out some cool new clothes for him. :) It was a great Father's Day, spent relaxing and spending time together. There's no better way to celebrate the day.

We're all excited about the dinner/dance coming up in Cairo at the end of the month! It is going to be so much fun, and I hope that a lot of people from our area are able to make it. The food and music are going to be great, and we are going to have a blast!

Have a great week!

With love,
Amy

If I bought my peas in Mounds, I'd buy 'em at Stop & Shop

2007-06-17T13:51:00.000-05:00

I just had the nicest conversation with a gentleman at the Stop & Shop Supermarket in Mounds, Illinois. Jeff and Bobby were brave enough to post their phone number for questions about Sahara's benefit event, and so I rang with my list of questions. What a pleasant conversation! After 12 years of New York grocery stores, those midwest charmers still make me yearn for the good old days when manners mattered. It's cool that customer appreciation is alive and well.

Anyway, the benefits page has been updated, but here's the scoop. If you can't make the dinner but want to help, send checks payable to Sahara Aldridge to:

Stop & Shop Supermarket
Attention: Bobby & Jeff
304 S. Blanche
Mounds, IL 62964

Be sure to tell Jeff and Bobby you're from the blog and won't need a dinner--otherwise, they'll be swimming in leftovers. On another cool note, a local organization has agreed to match whatever is raised for Sahara that night. So let's all get in there and pork chop that tumor right out of her brain!

Helping Sahara...it's better than food and (for the grown-ups) s-e-x

2007-06-15T06:44:00.000-05:00

This one is for all my English teachers, who are probably either long gone from this earth or too busy correcting grammar at the nursing home to notice. But I care. It's that red pen in my brain. It wants to fix the paragraphs in that last post SO badly. And I've tried... but even today, it's not happening.

Moving on, I'm just going to say it once again: if you're near Cairo, go eat the pork chop for Sahara. And if you're not, think about buying one anyway. If $15 for a pork chop donation is too much (we all understand that), then do what's right for you. Maybe it's $2 for cole slaw. Or $1.35 for a couple cans of beans. It all helps tremendously. Her treatment is frighteningly expensive.

And, according to this morning's news, helping can actually get your brain all excited. Scientists now say that giving to charity turns on the same magical wires that get happy when we have good food or sex. (Adults only, for goodness sake!) Here's the story: http://news.yahoo.com/s/nm/20070614/hl_nm/brain_altruism_dc

Cairo, without the baksheesh

2007-06-14T06:09:00.000-05:00

Wouldn't all of us go to the ends of the earth to help Sahara? How about Cairo? No, not the one with camels, broadcasted prayers, and the best lamb kabobs I've ever tasted. Been there, done that. Still trying to figure out why they had chickens in the airport.

But there's a smaller Cairo with a bigger heart, and for many of you, it's right across the river. In a couple of weeks a wonderful group of Sahara helpers are putting on a great party to help her--and it includes a pork chop dinner. It's incredibly reasonable. It's going to be a blast. What's stopping you?

In fact, what's stopping any of us? Click on the poster to the left (I'll add full details on the fundraising page this weekend) to get the scoop. If you're local, stop by or call one of the businesses listed on the poster and sign your family up.

Can't make it? Why not buy a dinner anyway? Let's show the people in Cairo that we support their efforts to help Sahara. Sit tight on that and I'll get you an address. Promise.

Sahara continues to do well. She had so much fun riding last night. She told me that it's much better riding with Grayson up there with her - she's not scared to fall as long as she has her hands on her shoulders. Grayson rides in back, and S rides in front, holding the bar. They decided that the bar was easier than reins, and it helped so much. Sahara looked so comfortable this time! It was great!

This weekend is the Relay for Life here in Cape. We are doing the Survivors Walk on Friday evening, pushing Sahara along in the wheelchair. It should be fun. I know Jen (and I think Dan, too) Hecht will be walking in the Relay itself. Bless her heart. She is so wonderful. Gramma Dooley is out of commission for a while following last week's foot surgery, or I know she'd be walking as well! Everyone send her your healing vibes!

The bathroom is rockin' right along and will hopefully be done sometime next week. Sahara is very happy about that. :)

Blogger is giving me some weird formatting, so if things are running together, be patient. I've corrected it, but it wants to be a stinkypants doodoohead this morning.

It's all good, baby

2007-06-07T06:28:00.000-05:00

I’m so glad that Pamela had a much-deserved vacation. She is truly the Godmother of this organization - without her, I couldn’t communicate with all of you! Isn’t she the greatest???

We have had a marvelous couple of weeks…the only bump was having to increase Sahara’s decadron slightly (we were soooo close to getting her off of it…drat). There has been a lot going on around here! Shannon’s been working with her as much as possible, stretching and exercising her legs, arms and hands. A couple of days ago, she regained the ability to wiggle the first finger on her right hand. Shannon and I were bouncing off the walls because of this, and she, as usual was like, “what’s the big deal?” ARGH!!! It takes a lot to impress this kid. LOL. But we know what a milestone it was. She couldn’t do that for so long.

She is also going outside every day now, and LuLu cries like a big ol’ baby when she goes back in the house. It is so wonderful that she wants to get out and do things again.

Horseback riding continues to be a hit, and last night was the best session yet! Grayson (horsewoman and volunteer extraordinaire) rode with her, and Sahara loved it. She was much more comfortable and was able to ride for a full 30 minutes. She told me over and over that she had SO much fun. We are so grateful to have such a wonderful therapeutic program here!!! To Betsy and ALL of the volunteers who give so generously of their time - THANK YOU. You are truly gifts from God.

Speaking of gifts from God, we are thrilled to announce that the construction on Sahara’s bathroom began this week! Grampa Dooley has coordinated this miracle, and it is coming together so well. The tub was installed today. They still have quite a way to go, but it is so much fun to see it actually coming together. Every evening, Shannon has to wheel Sahara down the driveway, down the street, up between our yard and the neighbors’, through the gate, through the laundry room and family room to see what progress has been made that day. (’cause there is NO WAY she’s going down those basement steps…LOL)

She is getting really excited about finally having a bathroom that will suit her needs! When we can finally have everything she needs on one floor, I am going to breathe the biggest sigh of relief. And I know she will too. We owe all of this to the Milwaukee fundraiser angels…thank you, thank you, thank you!!!

Thanks to Linda and the gang for sending the amazingly cool stuff from that fundraiser - it was like a party in a box!!! The next best thing to being there, for sure. We had so much fun going through everything, seeing the faces in the photos, all of the great stuff that was given out…it was great. Sahara loved it all!

Susan F. - I’m still having a hard time convincing Sahara that it really, truly IS Rick in the Mission Magic cartoons!!!!!!! (“Oh, come ON, mom, he doesn’t sound anything like that”)Thank you for sending that dvd!

We have a small problem here…Shannon is rooting for San Antonio, while Sahara says that the Cavs will take the championship. I have a feeling there will be some sort of wager between them, and if I know Sahara as well as I think I do, if she wins it will involve shopping. Lots of shopping. LOL. (Hey Paul B. - Sahara said to tell you GO CAVS!!!)

With love,
Amy

The balance beam

2007-06-05T21:07:00.000-05:00

Yes, I have returned from Vegas. Vacation is a wonderful thing. If you've never been to that desert playground, I highly recommend it. On the warmest day, it was 104, and let me tell you, with 10% humidity, it's not that bad.

Sahara is doing well--continuing to show interest in the world around her. Over the last week, she and her parents have been working on balancing her steroid dose to a lower level. It's tricky stuff. But with time and patience, I have no doubt they'll find a level that works without the giant baggie full of side effects.

Love is all you need

2007-05-26T08:08:00.000-05:00

Since God and Sahara seem to have things in good hands lately, I'm going to take a little break. This evening, I'm zipping out to Vegas for a few days of bright lights, excitement, great shows (we're seeing Love, woohoo!) and delicious dining...not to mention a spa treatment or two.

So, you'll just have to re-read the last few posts again and again for the week. Hey, they're awfully good. Rest assured, if Amy calls me with anything y'all should know, I'll chew my way into the hotel business center to get the story out there.

Besides the garden-variety Aldridge worship we all do so well, I want to send extra-special (with leopard spots and sparkly beads) thoughts to two of our Sahara site regulars. Nancy from Boston recently completed a 96 mile bike ride for charity with Sahara on her back, in her heart, and of course, on her wrists. Brava!

And Gramma Dooley, bless her heart, finally gave up her gall bladder. Rumor has it she made the anesthesiologist and the surgeon both buy a Sahara bracelet...and she woke up singing "Don't talk to strangers..." Healing wishes to you, my friend, from everyone out in Saharaland.

See you in a week!

Everything is beautiful

2007-05-22T22:09:00.000-05:00

Yesterday at work we had an event that involved roaming photographers, and despite my pleas that I am Amish or photograph hideously, they snapped away, every chance they got. In the vast majority of the candid shots, I am curling in my lips in a really bizarre fashion, no matter who I'm talking to or sitting with.

This makes me think that this is actually my normal work face, and that scares me. Do people see me like that? What do they think? On the other hand, my hair, which is a month overdue for both cut and color, looked cool. I really do have early-60s Beatle locks. Who knew?

How we see ourselves...it's so important, isn't it?

Hello, everyone!

The past week has been so wonderful - a dream come true. Sahara has been feeling so much better! The MRI results and news about the possibility of the tumor being dormant have really made a huge difference around here. Maybe, just maybe, we have taken a turn for the BETTER for a change.

The weekend was the frosting on the (chocolate) cake. LOL. She woke up Saturday ready to go places and do things. We were astounded by this...she has barely left the house except for doctor's appointments for the last 6 months. Horseback riding was our first glimmer of hope.

But Saturday was incredible. We dragged Shannon along, and I know he enjoyed it too. First she wanted to go to Target...imagine that. Next we hit Petco, then strolled through Goody's.

We ended up having dinner at Outback, where she enjoyed a big salt-free steak. :)

It was so much fun to be out and about, doing things that we used to take for granted. It didn't end there...Sunday she asked to go to the mall. The MALL!!! We spent about two hours shopping for summer clothes, had a pretzel, and made our obligatory girly purchase at Bath & Body. (Have you smelled the new Sunset Mango lotion??? HEAVENLY!!!)

On our way home we were listening to the radio, and suddenly she was singing along to "Here I Go Again" byWhitesnake. She has always loved that song - and sinceI haven't heard her sing in months, that was such a great moment!!! She told me later, "Mom, I really had fun this weekend." THAT was pure music to my ears.

Thanks to Madison Cannon for sharing your birthday cake with us on Saturday...Sahara would live on the cake diet if we would allow it. LOL. And really, one piece would have been enough!!!!!! :)

Tonight was special, too. Sahara was given the CJHS Terrific Tiger award for the month of May, which was presented to her at the school board meeting this evening. The Hecht clan joined us there, which was so sweet. (Erin and Evan, you give great hugs!!!) It was all I could do to hold it together when the board members presented her with the medal and certificate. I kept thinking how much has changed since she won the same award at CMS exactly one year ago this month.

When everyone clapped for her, I was so very proud. It took guts for her to overcome her nervousness about going out in public - but I think she's done it. We thank the teachers and principals at CJHS for being so kind to Sahara in giving her this award. Sahara said,"But I didn't DO anything!" I had to explain to her that she has been so tough, fighting like crazy to beat this tumor, and she has been on the hearts and minds of the CJHS family all year. They wanted to honor her with the award. That seemed to satisfy her!

Tuesday means a trip to the horse barn and a fun ride on Candy. Sahara can't wait to get there. It is so nice that she now has that to look forward to each week. What a blessing!!!If we can continue on this track of steady improvement, things are gonna be a whole lot brighter around here. Thank GOD for the miracles we have seen in the past week. We are so grateful that Sahara is smiling more and more. :)

With love, Amy

You take the cake

2007-05-17T06:25:00.000-05:00

I discovered a couple of things today. First of all, I had a conversation with Sahara's doctor in Houston that both renewed my faith and totally surprised me when I thought I couldn't be surprised any more. Second, I found out that Sahara was paying attention in Mrs. Parker's class last year. Who knew????

The verdict: Sahara's tumor is still stable with NO new growth. No fluid buildup, no swelling...YEAH!!!! We of course want to hear that it is shrinking into oblivion, but that will come in time.

The shocker came with the next part of her report. The radiologist brought her the MRI reading and said, "This is a low-grade tumor, right? It appears to be dormant." She was as stunned as I STILL am by that statement. She told him that it had been graded stage 4, glioblastoma multiforme when it was diagnosed last July. Well, right now it is NOT behaving like a GBM.

Could it BE that everything we have done to this point has actually had enough effect on the tumor to stop the activity within it????

It looks like the answer is...YES!!!!! I just couldn't wait to get to the other room to tell Sahara the incredible news. I explained everything, first about the tumor remaining stable (which does not impress her), then about the fact that it seems to be in a stage of very low activity, or even dormant. I asked her if she understood what "dormant" means, to which she replied, "Yeah, I learned what dormant means back when we were studying volcanoes in Mrs. Parker's class last year. If a volcano is dormant, it's not moving. It's not active."

I thought, wow, what a PERFECT way to explain it, and I didn't even have to! LOL. So, Mount Tumoria is quiet. It's still in there, in all of its lumpy, ugly glory, but right now it doesn't have much to say. We are going to continue exactly as we have been doing and keep waiting for it to do some serious dissolving. Today we reduced her decadron again, down to 3 mg per day, and as long as she doesn't develop any problems we will reduce it again in another few days. What a blessing it will be if she is able to stop taking it entirely.

She was geniunely happy this afternoon - the happiest I've seen her in ages. She even felt like going outside and playing with LuLu for a while. She and Shannon stayed out for about an hour, which is the longest time she's been in the yard since last summer. This is the fourth day in a row that she has felt pretty darn good - and I'm praying that with this amazing turn of events that she will be feeling good for many days to come!

I went in to work for a couple of hours this afternoon, and on the way home I stopped at the grocery store and picked up a small chocolate cake in the bakery. I had them write "Sahara, YOU ROCK" on it. She was really glad to have cake for dessert tonight. LOL. It was truly a day for some celebration.

OUR GOD IS AN AWESOME GOD...let no one ever forget that!

With love, Amy

Good vibrations

2007-05-16T01:37:00.000-05:00

Sahara's had three really good days in a row. She's been sitting up more, talking more, and acting much more alert. Today she had an MRI, which is always nerve wracking, but we all did very well. We finished too late to get a radiologist to read the scans, and I had to get the cd shipped overnight to Houston. They'll have it soon enough, and we will hopefully hear some GOOD news tomorrow.

Praying hard that the improvements she's had lately are good signs that the beast might be shrinking. As soon as we know some results, I'll let y'all know.

A million thanks to everyone who participated in the Milwaukee fundraiser on Saturday...another fantastic effort by our Rick Springfield fan club family. Sending big hugs to Teresa, Linda, Pamela, Dawn, Michalle, and ALL of you who helped or attended...our deepest love and thanks. Thanks to Rick for the shirt off his back, too. LOL.

My goal is to attend next year- and perhaps help with a fundraiser for another family who needs it - with Sahara by my side. :)

And just how lucky are we??? We have GRAMPA Dooley heading up Sahara's bathroom project!!! This family was truly heaven-sent to us. Sahara is looking forward to taking baths without Shannon having to haul her up the stairs like a sack of potatoes. LOL. If it wasn't such a scary sight, it would make a reeeeally funny video.

Horseback riding was cancelled today, dang it. Maybe we can go another day this week. She enjoys that SO much. It's a great motivator to get her out of the house for a while!

I'll post again when there's news about the MRI. Everyone just keep praying!

With love, Amy

Rocked for Hoops

2007-05-13T19:50:00.000-05:00

The Rickchicks continue to amaze me, and if you are a Saharafan, tonight when you say your prayers, add a collective thanks to the mix for blessing the world with such a spirited, giving group. And another thanks for giving Rick the heart, soul, talent (and body!) that inspires his fans to help Sahara.

Saturday's Rockin for Hoops luncheon brought in an amazing $13,450 for Sahara. Which means, if I've read the plumbing catalog right, we can definitely do that solid gold toilet with the mink seat. Woohoo, people! Bless you all.

It's almost as exciting as having Rick talk about me during last night's concert...I just hope that giant carrot wasn't headed in my direction. Oh my.

Seriously, though, thank you to every single person in that room--and every single person who helped make it happen. You are all blessings in Sahara's life.

A big thanks to Laurel for sharing the photo in her online gallery--great shot!

Homecoming

2007-05-09T23:47:00.000-05:00

This weekend I am headed to Milwaukee, and it's a homecoming of sorts. I lived in Wisconsin for much of my childhood, and there is a part of me that still considers it home. Twenty minutes after my plane lands, I'll have slipped into the rounded German accent. It's a quick trip, so I won't have time to visit the old homestead. The last time I did, we drove through the old neighborhood and all the names on the mailboxes were the same...except the one on my old house. It was a good place to call home.

On Saturday, I'll be speaking for Sahara at a luncheon put on by a dedicated group of Rick Springfield fans. We'll be raising money to pay for her bathroom renovation--a potty party! Wish us luck, and if you'd like to chip in, the link to Sahara's fund at US Bank on the right will do the trick. Just mark the memo on the check "PP" so the money can be set aside to cover the remodeling costs. Having an accessible bathroom will make Sahara's life much easier...and who doesn't need a cheery loo?

Amy's busy being a whirling dervish, so Shannon has hit the keys this evening.

Sahara has been feeling fair this week, and seems to be smiling more. Of course, this makes my own week so much better. She went horseback riding again Tuesday evening and is already getting used to the routine at the barn.

We're down to only 25 cookbooks - out of 5000!!! Thank you so much to EVERYONE who has bought or helped to sell them. We are simply overwhelmed by the response to these wonderful cookbooks, which were put together with so much love by employees of Southeast Missouri State University.

There's a very special girl at Oak Ridge Elementary School. Her name is Brittany Anschler, and she worked very hard baking sugar cookies and chocolate chip cookies, and sold them to raise money for Sahara's cancer fund. She raised $154.00! I had the pleasure of meeting Brittany, and she is such an incredible kid. Thank you, Brittany, for your kind heart and hard work. We appreciate you!

There are two new fundraisers in the works! Our great friends at P-Mac Music in Cape Girardeau are running a special, with all proceeds going to the cancer fund.For the next two months, you will get $1.00 off of every item you purchase at P-Mac if you are wearing your Sahara bracelet. If you don't have one yet, they'll be glad to sell you one.They have purchased 1000 more Hope for Hoops bracelets - they are the same orange and white swirl bracelets that the amazing Gramma Dooley has been selling, so if you want one, now is your chance! Go by and see Eric or Paul and wear your Sahara bracelet proudly!

Next, on June 30, at the Elks Club in Cairo, IL - "A Night for Sahara." There will be a full dinner, live band and dance, and tickets will be $15.00 per person. All of the food, drinks and entertainment for the evening have been generously donated, and 100% of the night's proceeds will be given to Sahara's cancer fund. Tickets will be available at P-Mac Music, Stop and Shop in Mounds, IL, the Elks Club in Cairo, IL, and from Bobby Pace, Jeff Berryhill or Stephanie Dixon. More details and contact numbers will follow soon. Come and join us for an amazing night of food, music and fun, southern Illinois style!

In closing, something I wrote for Sahara.

I wanna live
don't wanna die
and that's the way it is
I wanna live
I will survive
and I'm never giving in

Shannon