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!