Free as a bird now

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

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

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

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

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

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

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

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)

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

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

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

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

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

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

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

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

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?

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

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

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)

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

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

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

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

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

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

1. 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!
2. 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.
3. 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.
4. 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.
5. Dr. Noah Drake observed Sahara's surgery personally and the neurosurgeon let him tie two sutures on the back of her head.
6. 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

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

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.

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

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

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

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

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

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

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!

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

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

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

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