A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Lance Armstrong’

Lance Armstrong, Oprah Winfrey, and LIVESTRONG

At thirteen years old, Lance Armstrong was one of my greatest heroes. I admired and connected with him in many ways– as an athlete (yes, dancers are athletes,) as someone who had also faced cancer, and as someone who helps others fighting cancer.  Friends and family know this about me, and many are asking me how I feel about Lance’s cheating and lying confession last night during his interview with Oprah Winfrey.  I feel sick.  He must feel sick.  Everyone he has betrayed for so many years must feel sick.  Lying and cheating create a tangled web that traps innocent people.  Cheating creates a false fortress that can only be supported by lies. Lying builds the foundation for more lies.

Confession is good. Lance’s confession sets the table for forgiveness.  

What makes me feel the worst is that I looked up to Lance as a hero—not because of his awards or celebrity status—but because I was touched by the kindness of his heart.  I imagine those who are suffering the most right now are people who know him best… his family, close friends, and those who run LIVESTRONG.  This brings me to the most important part of my post.

This year, for the third year, I will be a LIVESTRONG Leader.  I have had the tremendous opportunity to visit headquarters and to communicate with employees at the foundation over the past two years.  Although my main focus in advocacy is childhood cancer, I will continue to support LIVESTRONG because those who run the foundation, including CEO Doug Ulman, do an outstanding job of serving the cancer community.

This is a link to Mr. Doug Ulman’s interview this morning on the Today Show.

http://todaynews.today.com/_news/2013/01/18/16583667-livestrong-ceo-armstrongs-admission-brings-both-sadness-and-relief?lite

Sometimes I think too much…

As I was searching my mind for comparisons that will stress the importance of continuing support of LIVESTRONG’s services, even though its founder has fallen from Grace,  I think of what would have happened to St. Jude Children’s Hospital if Danny Thomas’ reputation was “tarnished” in some way.  My point is… the need would still be there. 

The need is still here

People are diagnosed every day with cancer.  They need a place to turn for answers.  They need navigation services.  I know of no better place for this than LIVESTRONG.  I know of no finer people to take your hand and lead you through the fight of your life.

LIVESTRONG was born through Lance Armstrong, but it lives on because of the millions of people who have shown their support for helping others in need.  Please look beyond the media feeding-frenzy and remember the cancer patients who still need our help.

My heart breaks—not because I feel betrayed—but because I fear for those who may not receive the help they need.  What if… what if this means less support for critical services that save lives?

I cannot accept that—not without fighting hard to keep hope alive.

Let’s move on to the business of saving lives.

LIVESTRONG

 

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What I Know About Lance Armstrong

Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

In three words I can sum up everything I’ve learned about life: it goes on.

~ Robert Frost

 

 

Thank you, Mr. Frost. Sadly, this applies to cancer as well. “It goes on.”

Two and a half years ago, when I was beginning the publishing process for my book, I began sending out requests for endorsements.  I found it fascinating that this was one of the very first steps; I found it fascinating that authors receive their endorsements from sending out the first couple of chapters before it is even edited, before the book is even complete.  I soon learned reasons why this is so.  People have very busy lives, and reading an entire book is beyond what most will invest for an endorsement request. Secondly, it takes a very long time to retrieve the endorsements from the requests before an author can compile their advanced praise for their work.

What I learned about human nature was one of the most valuable gifts that I received from being involved in the book endorsement process.  Responses were nearly all genuine and caring, even when people were “too busy” to take a look.  Each time that Grace would receive an email with an endorsement, I would be thrilled.

I remember the day clearly when an email arrived– not just any email– an endorsement for Grace from Lance Armstrong! What this meant to me, and what this still means to me, is something beyond our worldly vocabulary. I had read Lance’s book, It’s Not About the Bike, during my cancer treatment and received strength from it for my fight.  I had admired and respected his compassion and dedication to create LIVESTRONG.  Personally, I knew many survivors who had been helped tremendously through LIVESTRONG’s navigation services.  I knew of, and was grateful for, LIVESTRONG’s programs that teach children in schools about cancer.  Reality called and I also realized that Lance Armstrong was a “celebrity,” which meant the chances of him ever looking at anything that Little Ol’ Childhood Cancer Patient Melinda wrote were slim to none.

Was I ever wrong about that last one!

“In her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, Melinda Marchiano offers an honest and inspiring portrayal of her cancer experience through the eyes of a teenager and proves there is medicinal value in love and laughter. Melinda and I share a common bond. We are survivors. And we believe in the importance of empowering fellow survivors to live life on their own terms. By sharing her story, Melinda is giving a voice to this global epidemic that needs immediate attention. I am grateful to Melinda for having the courage to speak up and for her generosity in helping others fighting cancer.”

—Lance Armstrong

It is true that Lance and I share a common bond.  As survivors, we share an understanding.  As survivors, we share a passion to help others through the nightmare that is cancer. As survivors, we work to continue to “empower fellow survivors to live life on their own terms.” As survivors, we step up to the challenge of “giving a voice to this global epidemic that needs immediate attention.” 

What I do know about Lance Armstrong is that he is passionate about helping cancer patients— even young cancer patients who write books with the hope of helping others. 

What Lance Armstrong has created through LIVESTRONG is nothing short of a treasure of services for people who want to survive.  For some, these services mean the difference between life and death. LIVESTRONG services are vital.

This is undoubtedly a difficult time for everyone at LIVESTRONG. I want to send my sincere thanks to you for your outstanding work, and to encourage you to continue ahead with pride for all that LIVESTRONG provides and all that LIVESTRONG accomplishes.  You have my continued support.

http://blog.livestrong.org/2012/10/17/lance-armstrong-to-step-down-as-chairman-of-livestrong/

What I also know now about Lance Armstrong is that he wants LIVESTRONG to LIVE ON.  Lance chooses to save lives.

Me too…

LIVESTRONG Leader Assembly March 2012

Thank you LIVESTRONG, for 15 years of serving the cancer community!

Why I LIVESTRONG

Grace: A Child's Intimate Journey Through Cancer and Recovery

“The goal of ours has never been the biggest. It’s to have the most significant impact. We can’t do it without you”  ~Quote from @LIVESTRONG Twitter Page

I find myself in Austin, Texas today. I am here to attend a LIVESTRONG Leader Assembly. Two hundred leaders (serious cancer ButtKickers!) from around the world have gathered here. It is no secret that I am focused on doing all that I can do to end childhood cancer; I also know that the mission of LIVESTRONG is one I absolutely need to support.

When people hear the word, “LIVESTRONG,” most know the organization has something to do with Lance Armstrong. The last middle school I spoke at, the kids had no idea of who Lance Armstrong is! I was excited to tell them who he is, what he has accomplished, what he has created, and to give them yellow LIVESTRONG wristbands. They were then excited to go tell their friends about Lance and LIVESTRONG.

What I have learned about LIVESTRONG has given me a great desire to help them achieve their goals. I have tremendous respect for the respect they have for their fellow humans. I find that compassion, understanding, intelligence, commitment, dedication, tenacity, and guts define LIVESTRONG.

Rather than attempt to summarize the LIVESTRONG Manifesto, I will copy it in full below. If you know someone who has just been diagnosed with cancer—someone searching for treatment options— calling LIVESTRONG is an excellent place to begin gathering information. This is just the tip of the iceberg for the help they have to offer.

The LIVESTRONG Manifesto (from www.livestrong.org )

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is LIVESTRONG.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. Your healthcare team. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about preventing cancer. Finding it early. Getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is LIVESTRONG.
Founded and inspired by Lance Armstrong, one of the toughest cancer survivors on the planet.

I am grateful to have been chosen as a 2012 LIVESTRONG Leader. I look forward to using everything I learn here to truly make a difference in this world for people fighting cancer.

Did you know that LIVESTRONG has a program called LIVESTRONG At School? http://www.scholastic.com/livestrong/

If you are an educator, you can have a huge impact in the life of a child by sharing this information.

Now, more meetings… more knowledge… more cohesiveness… more hope!

For these reasons and many more… I choose to LIVESTRONG !

 

 

Logjam

Grace: A Child's Intimate Journey Through Cancer and Recovery

When I miss communicating with you for a few days, I get all messed up. It’s like all of the things I want to share with you get plugged up like logs in a logjam. Then, in order to share my “logs” in an orderly fashion, I have to straighten them out of their tangle before they will proceed with any recognizable order.

Let’s see… Log #1 out of the gate…

Did you hear that Lance Armstrong has retired from professional cycling to dedicate his focus to fighting cancer? Most of you know how much I admire Lance and how much he inspired me during my treatment and recovery. I have seen stories in the news recently of Lance visiting children’s hospitals… can you guess where I am going with this? I sure would love to see LIVESTRONG expand their STRONG ARM in order to devote more of their efforts to combating childhood cancer. I think it’s great that they have the very unique LIVESTRONG at School where teachers can download age-appropriate materials to help their students learn about cancer. Did I tell you that I applied last month to be a LIVESTRONG Leader? Giggles… I forewarned them that I would be “infiltrating for the advancement LIVESTRONG’s childhood cancer subdivision!”

Log #2… untangling…

My mom and I have been working with a great guy, Benn, who is designing a new website for me where people can buy Grace: A Child’s Intimate Journey Through Cancer and Recovery. The site is www.melindamarchiano.com

Log #3… straightening…

We did some research before we chose a merchant processing system and we are very excited to tell you that we decided on a Give Back program that benefits Children’s Miracle Network Hospitals. Cottage Hospital is a Children’s Miracle Network Hospital and the people there saved my life… we love this choice!

Most importantly of all, I am thinking of and praying for all of the children who are fighting cancer and recovering from cancer today. I am thinking of the families who love their little warriors and who would go to any lengths to help them in any way. I am thinking of those brothers and sisters whose hearts are crushed by the site of suffering.

And for the moms and the dads who keep pouring out your love… till it can only come out in a drip… may God bless you and fill you up to the top again with His Living Water.

Prayers for Savannah

 

I Met Jenna Bush Today!

The exclamation point at the end of my post title tells you how excited I am about meeting Jenna Bush today:) Each time I recall this morning, I smile and my heart feels happy.

My mom noticed an ad in The Tribune earlier this week. It said that Jenna Bush Hager was scheduled for a discussion at the Performing Arts Center at Cal Poly in San Luis Obispo (exactly where I will be performing in The Nutcracker in a few weeks:)) on November 8th. I remember her questioning the date, and then she concluded that the paper must have made a mistake on the date and that it had to be today.

We dragged our weary little bottoms out of bed in the deep darkness of morning and prepared to travel north to San Luis Obispo. I brought along a copy of Grace: A Child’s Intimate Journey Through Cancer And Recovery to give to Jenna (yeah, right… like I would really get the chance to do that!!!) Mom and I joked on the way there about how this whole adventure reminded us of setting out for Solvang to look for Lance Armstrong so he could sign my port jar– like a needle in a haystack, we found him. Not only did we find him, but we somehow managed to accomplish our mission, despite the massive crowds.

As we walked to the entrance of the Performing Arts Center, there, over to the far side of the entrance, was none other than Jenna Bush. She was with a photographer who was taking her photos, one other man, and that was all.  Mom quickly assessed the situation and figured that the man with them was most likely Jenna’s “Security Person.” After walking over to this “Security Person,” we found his name to be Cornell, and he was very friendly. Mom explained that I had a gift to give to Jenna and what it was. Cornell responded with an open heart, kindness, and care, asking us to wait with him until Jenna was finished with her photos.

And then, I met Jenna Bush Hager.

I have to tell you that my excitement is not because I met “Jenna Bush,” but because of the person I learned that she is from my experience talking with her. Her smile is brilliant and when she looks at you, she looks straight into your eyes and soul with genuine care. I am still deeply moved by the way she stopped everything– even though she was scheduled to speak within minutes– to ask me thoughtful questions about my book. She is a lovely, beautiful woman, and I feel blessed to have had our lovely talk.

Just in case you don’t know, Jenna is a contributing correspondent for the Today Show, and she’s chair of UNICEF’s Next Generation whose purpose is reducing preventable childhood deaths worldwide. Jenna’s book is “Ana’s Story,” and I am really looking forward to reading it.

To Jenna’s parents, former President Bush and Mrs. Laura Bush, what a beautiful daughter you have raised! You must have given her lots of love, because she sure does have a lot to share.

I am extremely grateful she chose to share it with me today.

Dear Oprah…

Dear Oprah,

I thought long and hard about what I want to do for my Make-A-Wish—where I want to go, who I want to meet. It seemed to be the toughest decision in the world. Each desire that popped into my head left me feeling even more indecisive, and I was left searching for what I truly wanted.

Then, it came to me; it was so obvious. I want awareness. I want better care. I want understanding. I want hope. I want a voice for all of the kids and families who are too beaten down by cancer that no one can hear their cries. People know very little about childhood cancer and greater awareness will lead to earlier detection and SAVE LIVES.

I wish with all of my heart and every fiber of my being that someone, at last, educates people about childhood cancer. My wish is, in fact, not just a single desire, but the wish of thousands and thousands of people.  Yes, childhood cancer is sad, but if we acknowledge it, face it head on, and make everyone aware of it, many children’s lives will be saved and many parents will not have to lose their child.

My wish is the single most passionate, heartfelt desire I have ever known, and with your help, I am hoping and praying that it will come true.

With my sincere appreciation for considering my wish,

Melinda 

In her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, Melinda Marchiano offers an honest and inspiring portrayal of her cancer experience through the eyes of a teenager and proves there is medicinal value in love and laughter.  Melinda and I share a common bond.  We are survivors.  And we believe in the importance of empowering fellow survivors to live life on their own terms.  By sharing her story, Melinda is giving a voice to this global epidemic that needs immediate attention.  I am grateful to Melinda for having the courage to speak up and for her generosity in helping others fighting cancer.   – Lance Armstrong      

Grace: A Child's Intimate Journey Through Cancer And Recovery

 

                                                               

LIVESTRONG Day is October 2nd

Guess what I will be doing on LIVESTRONG Day? Are you guessing? Do you think it might have something to do with LIVESTRONG?

I will not puzzle you any longer:)

LIVESTRONG Day Event Page:

http://www.livestrong.org/Take-Action/LIVESTRONG-Action/Livestrong-Day-2010/Event-Details?EventId=3129

This, as you can imagine, makes me happy, happy, happy! Mr. Lance Armstrong did a tremendous thing for my project to help children with cancer when he endorsed Grace: A Child’s Intimate Journey Through Cancer and Recovery, and this is my opportunity to support his organization, LIVESTRONG! I will update you as more of the plans solidify. Children raising money to fight cancer is beautiful!

Now I will take you back to the theme of the month… yes, you know by now… National Childhood Cancer Awareness Month.

One of the most recent ideas from Congress is to create a US postage stamp for childhood cancer awareness. Please write to your US Representative to show your support. 

http://www.kristinasrainbowsofhope.org/facts.html

This link has a list of childhood cancer facts, including:    

  • Attempts to detect childhood cancers at an earlier stage, when the disease would react more favorably to treatment, have largely failed. Young patients often have a more advanced stage of cancer when first diagnosed. (Approximately 20% of adults with cancer show evidence the disease has spread, yet almost 80% of children show that the cancer has spread to distant sites at the time of diagnosis).
  • Cancer in childhood occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.

The cause of most childhood cancers are unknown and at present, cannot be prevented. (Most adult cancers result from lifestyle factors such as smoking, diet, occupation, and other exposure to cancer-causing agents.)

Did you learn something????????????

Finally, I just spent a fun-filled weekend in San Francisco, celebrating my Gramma and Poppy’s 55th wedding anniversary with lots of our family. Congratulations, Gramma and Poppy! You are the heart and soul of our family, and I love you sooooooooooooo much!!!!!!!!!!!!!!!!!!!!!!

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