A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘LIVESTRONG’

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 !

 

 

Bye Bye New Orleans, Hello Atlanta

Without internet connection for two days, I feel there is so much I have missed sharing!

Very first, I want to thank Tiffany at New Orleans Children’s Hospital for helping me to be able to meet individually with children fighting cancer and their parents. This is the very first time I had the opportunity to go to each room to meet the children. I will be entirely honest with you when I tell you that my intention– each time I entered a new room– was to share hope with everyone I met in the room. By the time I walked out of each room, it was me who was inspired by the children. Each child, from little bitty ones, to teenagers, gave me something in my heart that I cannot even describe with words, as hard as I search for them. I met a one-year-old boy who had spent eight weeks in intensive care, with kidney failure and liver failure. Yet, there he was, sitting up by himself in the window seat of his room, like a real-life miracle. He was a bit timid at first, but when I showed him a photo of me with no hair and a therapy dog, he relaxed and smiled. The teenagers I met were very different than the little ones. They have a much greater understanding of what they are facing, and I could sense their fear. When I pointed to their beds and told them I was right there where they are three years ago, I could see their expressions change.

I could see HOPE.

And this is why Mom and I are traveling on this mission. We want HOPE for all of the children fighting cancer. We want less toxic treatments that will allow more children to live and to live a healthy full life after their battle. More people need to come forward to help, just like Benji Palus. I had the amazing opportunity to meet Benji at New Orleans Children’s Hospital when I was finished meeting with the children. Knowing how Benji volunteers hours and hours of his time to help children at the hospital, I imagined he must be quite a special person. When I actually got to meet him, his warmth, joy, and love far exceeded my expectations. Is there anyone who would like to hop on board the stop childhood cancer battle and become Benji-like? These hospitals need volunteers like Benji; the children need them and the parents need them. Sorry about the photo posts– click to see the whole photo!

With Benji and Tiffany at New Orleans Children's Hospital

On Friday night and Saturday, Mom and I attended the American Library Association Conference. To our great surprise, we met someone who helped us through my cancer treatments. When I was first diagnosed, my social worker, Robyn, gave us books and information. One of the books was written by a mom whose child survived cancer, and her name is Nancy Keene. I can see many of you who have lived in the world of childhood cancer nodding your heads like you know exactly who she is. Well, she and her lovely daughter, Allison, had a booth at the conference and Mom and I nearly screamed with delight when we saw she was there! We spent a long time talking together, and meeting her was the absolute highlight of the whole conference!

Today, we arose quite early and pointed HugoHopeMobile toward Atlanta. We traveled from Louisiana, through Mississippi, through Alabama, and into Georgia. Tonight, we are plopping into our beds in Atlanta. Tomorrow morning, we’ll be rising and shining early to go to Children’s Hospital of Atlanta. After that, we’ll continue northward to North Carolina. Unfortunately, I heard back from Duke Children’s Hospital. and I have to be eighteen to be able to visit with patients. 

Looks like I will have to use my time there wisely. I have an appointment to look at the University. Dr. Kleinerman told me some very great things about Duke University! I will be filling out college applications this coming fall. 

One way or another, cancer, I am out to stop you!

Wisdom on the Wall of Livestrong Headquarters

                                      

Dell Children’s Hospital and Livestrong Headquarters

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

Gosh, I barely know where to begin to tell you about this epic day of the Hope Tour!

Bone dry Texas finally received the rain today that they have desperately needed for months. Mom and I busted out our umbrella and made a mad dash through the pouring rain to HugoHopeMobile and fired him up to head from Houston to Austin. Yes, I it was backtracking, but for very good reason. We had the opportunity to tour Dell Children’s Hospital and Livestrong Headquarters. There is no way we could miss it!

The three-hour ride through lightning and heavy rain seemed to fly. Everything we saw along the road was interesting, and we gut laughed most of the way there and back about the silliest things. When I first saw Dell Children’s Hospital, it struck me how important it is for us to care for our sick children. We were met right as we walked in by a lovely and kind woman, Kip, who took us all around the hospital to see what an incredible facility they have. We learned that Dell Children’s is the only “Green Certified” children’s hospital in the world! Natural lighting, central gardens, and beautiful, spacious rooms make the hospital very child-friendly. All the rooms are private, they have a wonderful library (and librarian– Hi Gabby!) and they also have a Livestrong Survivorship Center. One of our very favorite things we saw was a fire engine X-ray machine!

Fire Engine X-Ray Machine at Dell Children's Hospital

After visiting Dell, we drove to Livestrong Headquarters where we met Leigh for a tour I will never forget. Right away, Mom and I were struck with Leigh’s warmth. I will tell you that Livestrong Headquarters was nothing like my imagination had dreamed up. Everything, from the building, to what was inside, to the way they run the organization, was truly ingenious. It is perfectly obvious that there are extremely sharp people running the foundation, and they do an incredible job. Yes, my word for everything I saw today at Livestrong is INGENIOUS!

 

Topping off our epic day, we returned to Houston and met my mom’s cousin, Kathy and her husband Rusty for a seafood meal I will remember for a long time! Tomorrow, the HopeMobile heads for New Orleans… visiting New Orleans Children’s Hospital on Friday morning.

Miracle Happy Dance!

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

The very first news I have to share is great, great news!

My buddy Braden Hofen received test results today… NED!!!!!  No evidence of disease!!!!!

Go ahead and do a happy dance, sing off-key at the top of your lungs, and if you live in a big city, stick your head out of the window and take a deep breath.  Ready? (This is for Braden, now…)

Yell, “Take THAT cancer!” 

This is 6 year-old Braden’s attitude, and I admit I love joining him in this sentiment.  You GO Braden, you Go!  For everyone who has been praying for him, thank you, thank you!

While we are on the subject of dances, I want to tell you about a 25 year-old woman named Jolene who has been fighting cancer since she was 17. On the tip-top of her “Bucket List” is to meet Ellen and dance with her on the show.  Well, some wonderful friends/angels came through with VIP tickets to the show on May 25th!  Now, her friends and supporters are posting a video on the Ellen Show Facebook wall showing her how much Jolene would love to dance with Ellen! They are asking people to please post and share this video:

https://www.facebook.com/video/video.php?v=2040929743405&comments

I hope you get to dance with Ellen, Jolene!

I don’t enjoy going from joy-filled news to disturbing, but I feel the need to pass this on.  I heard this story today about a woman who may have her children taken from her because she has cancer.

http://www.change.org/petitions/do-not-allow-nc-judge-to-take-alaina-giordanos-children-just-because-she-has-cancer

Finally, LIVESTRONG Community Impact Project voting has begun. When you click the link, you will be able to select a region and then vote for your favorite. http://vote.livestrong.org/

Just wondering. Do you still have colored hands for Brodie?

Sometimes miracles take a lot of prayer and a lot of work, but my goodness…

Braden…  NED…  Braden!

Miracles Do Happen!

Croak Cancer, Croak!

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

Swirling feelings from many directions have me spinning a bit today. I am very, very excited about being one of 251 people throughout the world who have been chosen to be 2011 LIVESTRONG leaders. At 7:00 am, I listened to my very first LIVESTRONG conference call. May I please admit that one of my favorite things about the experience was hearing different accents from all over the world? This is something I love about LIVESTRONG—they see cancer as a “global threat” that needs immediate attention. Truly, the entire world needs to notice, needs to learn, and needs to act now to fight cancer.  I am grateful for this opportunity to help LIVESTRONG make survivors stronger each day… and most of all, for the opportunity to help make cancer so weak that it croaks.

Yes… I wish cancer would croak.

As this day has progressed, I received news… bad news. I have an event scheduled for this coming weekend for the University of Art in San Francisco; they are raising money for the University of San Francisco’s Children’s Hospital. For a couple of months now, I have been communicating with a lady named Rachel who is planning this event. I haven’t heard anything from her for the past two weeks—until today. She has been spending countless hours at USF Children’s Hospital because her nephew, Sy, was diagnosed with a rare form of cancer two weeks ago. She has been planning this event out of the kindness of her heart to help fight pediatric cancer, and now, she is personally affected by the horror of  her loved one being struck by this terrible beast. Please pray for Sy.

To top off the swirling, I received mail today. I received Breanna’s program from her memorial service. Her mom, Helen, was very kind to send it to me.  I cried looking at her photos. I cried looking at her smile. I cried imagining what her family is feeling. I cried to know that she fought so hard, suffered so much, and now she isn’t here.

Yes… I wish cancer would croak.

Croak Cancer, Croak!

My buddy, Braden Hofen is telling cancer to croak too. In his own words, “Take THAT cancer!”

Go Braden! Go Sy!

Braden says, "Take THAT cancer!"

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