A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Mike Gillette’

A Night of Golden Lights at the White House- CurefestDC

Curefest 2014 252After the Curefest DC Welcome Event at Nationals Stadium, the attendees all headed to President’s Park across the street from the front of the White House. I never would have arrived without the help of Karla, who introduced me to my very first ride on the Metro. Since I live in an area where there are rolling hills, oak trees, strawberry fields, and cows grazing, this was an eye-opening city experience for me. I know it’s normal for people who live in DC and other cities to travel on underground railways, but I admit that my usual Podunk surroundings make it so I am utterly amazed by the setting and all the people! Thanks Karla– I would still be standing in the station with my mouth open.

Is it any surprise that A Night of Golden Lights is the brainchild of none-other-than Tony Stoddard? (A Day of Yellow and Gold to Fight Childhood CancerOur time together at this event was exceptional. I wish I knew the name of the singing group who sang “If I die Young” — it was beautiful! I do have this photo of the singers with Ellyn Miller (Smashing Walnuts Foundation) and her son.

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Mike Gillette, Emmy Award-Winning Filmmaker from The Truth 365, helped organize the evening’s events with Tony Stoddard. Thank you, Mike and Tony, for your never-ending passion and energy for the kids.

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One of the most meaningful moments for me of Curefest DC came next. Tony began by telling us about his son, Cole. Cole died from Stage 4 Neuroblastoma. I highly recommend reading this article Tony wrote for Cancer Knowledge Network, telling his story. https://cancerkn.com/promise-son/ Being present to hear Tony tell his story is something I will always carry inside me, and what followed next will stay with me forever. Parents and brothers and sisters took the stage to tell their stories. We need this. Giving these people a microphone and a caring, compassionate audience was beautiful. Each person who shared seemed comfortable that they were talking to a group who truly wanted to listen. We were all “family” on this night. We were all one. We were not separate. We were not alone.

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This tender and precious time of sharing set the tone for what we would do next… walk to the front of the White House.

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Slowly, almost somberly, the crowd began walking. I walked behind Tony, imagining what must be going through his mind and his heart. It was a time of reflection as our group neared our destination. If someone dropped a pin, we all would have heard it. It was a time of honor. It was a time of respect. It was a time of memory. It was a time of conviction that we need to do all we can to see that the pain and suffering present inside so many would not go without acknowledgement– would not wither without action or purpose.

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As we lit and lifted our golden lights together, we lifted our voices to sing, “Amazing Grace.” We sang the first verse through three times in a row. (Everyone chuckled when they announced we would do this because it is the only verse everyone knows!) A Night of Golden Lights at the White House was an evening I will always remember. I was wishing our president was not vacationing, so he and his family could look out their window and see hope for children with cancer. My next thought was, “It doesn’t matter.” What matters is that all of these people gathered with One Voice for our kids. 

To be among these people is life-changing. Each person I met left a piece of their heart in mine. I hope I was able to leave them a warm piece of my heart as well. 

Night of Golden Lights White House

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

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Suzanne Shelpman, A Bright Gold Spoke

 

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Suzanne Shelpman is one of Melinda’s Facebook friends. I notice Melinda and Suzanne have 233 “friends” in common. Suzanne is not a high school friend, or a Pepperdine friend; Suzanne is a caring, concerned advocate for children with cancer. Suzanne keeps track of countless CaringBridge sites  and Facebook pages where families post the latest updates on their child’s treatments, scans, and health reports. She follows the journeys of many children, and she writes beautiful posts on her Facebook page so that others can join her in caring, sharing, and praying. She saves all year long so she can donate to support friends who are raising money for childhood cancer research.

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“It snowed last night, so am headed over for a session of Spin cycling for Run for the White House for Childhood Cancer Awareness 2014. After I finish, it is my night to serve dinner to my unsheltered homeless friends.”

“I have several more kids’ updates and will post when I get back later tonight.”

                                                                            ~Suzanne Shelpman

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This is one of Suzanne’s latest updates about Carly, who we have all been praying for. And please remember Bryson!

“Warrior Carly who is battling a secondary cancer caused by the harsh treatment during her initial diagnosis will have a stem cell transplant tomorrow (Tuesday). Please keep her in your thoughts and prayers and remember her generous donor.”

                                                                           ~Suzanne Shelpman

https://www.facebook.com/groups/prayforcarlytomlinson/

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Not everyone can create and run a foundation, like so many childhood cancer families have successfully accomplished. Not everyone can create an Emmy Award-winning childhood cancer documentary, like Mike Gillette. Not everyone can go after the entire United States to light it GOLD, like Tony Stoddard. Not everyone can shave their head in support of their cancer-fighting friend, like Kamryn Renfro did for Delaney Clements. Likewise, not everyone can do what Suzanne so lovingly does each and every day of her life. She uses her life to help better the lives of children who are suffering.

Each one of us has something unique we can give to children fighting cancer. Each gift is like a Gold Spoke in a Wheel. All of these Golden Spokes are equally important and equally necessary to keep the Wheel moving forward. The Wheel must move quickly forward, because we have children’s lives to save.

My deepest thanks to Suzanne. Your sincere love is inspiring, and it encourages all of us to look inside to find our very best selves.

My deep thanks to all of you Gold Spokes out there who keep loving, giving, and sacrificing for the goal of ending childhood cancer.

Praying for Carly Tomlinson

Praying for Carly Tomlinson

Guest Blogger: Lee Marchiano

The Truth 365 Loves Taylor Swift

Taylor SwiftThe Truth 365 is launching a campaign to invite Taylor Swift to be an official celebrity spokesperson for children with cancer. They have been communicating with Taylor’s “team” and believe she may consider helping out. Do you remember the song she wrote for Ronan?

http://www.youtube.com/watch?v=_nVBsDP5DoM&feature=kp

Ronan Thompson was diagnosed as a toddler with stage-four neuroblastoma– cancer stole him away just eight short months later.  Maya Thompson blogged about her son’s illness, and her moving story found its way to Taylor. Maya received a phone call from Taylor, telling her she wrote a song for Ronan.

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“I was a blubbering mess telling her how much this meant to me as she was helping me keep your memory alive and helping me to do amazing things. How if I had to pick my dream person to be tied to your name, it would be her because she is full of so much pure goodness, just like you.”

                                                                        ~Maya Thompson, Ronan’s mommy

                                                                           www.rockstarronan.com

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Dear, dear Mike Gillette from The Truth 365 gives us these details on how we can all work together to make this happen:

Announcing the ‪#‎ThankYouTaylor Campaign!

“As a way to thank Taylor Swift for her years of kindness toward kids with cancer we are launching a social media campaign called #ThankYouTaylor.

Here’s how you can participate:

Step 1. Take a photo with a message for Taylor that includes the hashtags #ThankYouTaylor and #‎thetruth365film. Photos can be of individuals, groups, pets or anything that you can think of. Children fighting cancer are strongly encouraged to participate.

Step 2. Upload it to Facebook, Twitter or Instagram

Step 3. Be sure to tag it with the hashtags #ThankYouTaylor and #thetruth365film so that we can find your image.

We will then then choose 1,000 images and print a 36 sq. ft. wall mural for Taylor which she may accept or donate to her favorite charity. The mural will be designed as a mosaic made up of all of the images.”

 Ronan

 The inspiration for Taylor’s song, Ronan Thompson

“Talk is (Bleep); We Need Action” — The Truth 365

“Stop Talking and Start DOING!”
                                              ~Gabriella Miller
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Gabriella tells us to “Stop Talking and Start DOING!”

https://www.youtube.com/watch?v=QaoqnILa0l4

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Are you laughing and crying at the same time after watching and hearing ten year-old Gabriella express her opinions about our elected officials? One of the greatest things about being around kids is they tell you exactly how they feel. Is there anyone else who feels they need to hug her and give her high fives?

The signing of the Gabriella Miller Kids First Research Act by President Obama is the result of a long, arduous, and fervent campaign spearheaded by two of the most passionate people Melinda and I have ever had the blessing of meeting, Mike Gillette and Dena Scarpelli-Sherwood. This progress for childhood cancer research can be traced back to their hearts to help children with cancer and to their willingness to dive into the unknown and “stop talking and start doing.” They produced The Truth 365 Childhood Cancer Documentary to raise awareness, raise funds for research, and to gather petition signatures, all with the goal of uniting the childhood cancer community to work together to end childhood cancer.

http://m.whitehouse.gov/photos-and-video/video/2014/04/03/president-obama-signs-gabriella-miller-kids-first-research-act

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“Talk is (Bleep,) we need action.”
~Gabriella Miller
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“WOW…A 10 YEAR OLD WITH MORE BRAINS THAN ANYONE IN WASHINGTON!”

 The Truth 365 Childhood Cancer Documentary
The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to children fighting cancer. The film features compelling and inspiring stories of children and their families fighting cancer as well as interviews with political leaders and several of the country’s most respected pediatric oncologists. With the help of thousands of volunteers and highly focused social media campaign, the film will inspire millions of people to show their support for children with cancer. Host: Melinda Marchiano
To learn more about The Truth 365, visit www.thetruth365.org or Facebook at www.facebook.com/thetruth365film .
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“By combining the powerful medium of documentary with the viral nature of Social Media, we aim to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, the nation’s top pediatric oncologists and several influential celebrities. In this election-year we need for our politicians to hear the cries of these children and their parents, who are desperate for funding, less toxic treatments, and ultimately a cure.”
~Dena Scarpelli-Sherwood
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http://www.thetruth365.org/one-voice/
http://www.thetruth365.org/petition/
My hope is that Gabriella, Mike, and Dena will educate you, enlighten you, and inspire you to do more than talk about making a difference in the world of childhood cancer. Let’s play Follow-The-Leaders, or become leaders ourselves. There is no time to waste. We must begin Smashing Walnuts today.
Thank you Gabriella, Mike, and Dena. Thank you!
http://www.smashingwalnuts.org/

The Truth 365 Childhood Cancer Documentary

The Truth 365 Childhood Cancer Documentary

This Symphony will be a Masterpiece– “Music” to Change the World

 

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

“Every great dream begins with a dreamer.

Always remember, you have within you the strength,

the patience, and the passion to

reach for the stars to change the world.”
~Harriet Tubman

Patience is a tough one. We live in the age of The Instantaneous, which makes patience even more difficult to learn, being direly devoid of societal examples. But, anything worth our time and attention also requires our patience. I say this as I think of Mike Gillette, who has been pouring himself into the production of the childhood cancer documentary, The Truth 365. This project is not only enormous, it is delicate. Maybe it is because of this delicacy that it has never been done like this before. The World of Childhood Cancer is a sticky, tricky place to step into. Further, the thought of gathering information from diverse sources and compiling it into a visual call to action for pediatric cancer research is overwhelming to me! His task is nothing short of Conducting a Symphony. Only someone with tremendous love and passion would take on such a task—only a dreamer. Without a doubt, after meeting and working with Mike, I know he is a dreamer. Without a doubt, he has the “patience and passion to reach for the stars to change the world” of childhood cancer.

Our impatience tells us, “Hurry up and release the film!!!” Wisdom takes over and lets us know that there must be very good reasons for the wait. As this project has developed, it has taken on a “life.” There have been surprises and opportunities arising each day, and I trust Mike completely—which means patience. I admire his patience in choosing to make this film the best it can possibly be, and making the priority the children, instead of the awaiting, impatient audience. I will be the first to admit that I cannot wait to see it; I cannot wait to share it. When impatience knocks, I envision Mike juggling all kinds of things I could never imagine, and my selfishness shamefully subsides. Mike loves the kids, and his vision, compassion, and passion will be clearly evident when The Truth 365 is complete.

Thank you to all of the families, childhood cancer patients, siblings, doctors, teachers, and volunteers for your contributions of time and for your outpouring of support for this project. I patiently await the masterpiece I know will be arriving, via Mike Gillette, our Change the World of Childhood Cancer Conductor. 

Blessings to you Mike. May mountains move… all for our dearly loved children.

“For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice – no paper currency, no promises to pay, but the gold of real service.”       ~ John Burroughs

*** Thank you to Carina Corral and KSBY for your continued support to help children with cancer!

http://www.ksby.com/news/documentary-on-childhood-cancer-hosted-by-a-nipomo-teen-cancer-survivor-set-to-be-released-sunday/

Go Lane! Fire Department New Albany, IN

More and more support for Lane Goodwin!

Someone showed their love for this little boy by making him a Halloween Costume that included his wheelchair!

Update for my last post– Justin’s Tribute to Avalanna 9-29-12

http://www.youtube.com/watch?v=2sh3tmWFlB4&feature=youtu.be

It Takes Two to Speak The Truth

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

“It takes two to speak the truth—one to speak and the other to hear.”

~Henry David Thoreau

September is National Childhood Cancer Awareness Month. This past weekend, I had the opportunity to participate in a project that is bringing together the entire childhood cancer community– a project I believe will change the future of childhood cancer. I remember my oncologist, Dr. Dan, explaining to me how the cure rates for childhood cancer have improved remarkably, because of the sharing of information through Children’s Oncology Group. I have since learned how there are multiple childhood cancer foundations working hard to raise money for pediatric cancer research, many of them started by families whose own child has fought cancer. By taking a stand alongside one another, we can have a larger impact, and make a greater impact faster. By joining together, we can learn and share The Truth.

The project, The Truth 365, seeks to create “One Voice” for all. In creating One Voice, we can “speak the truth,” creating the opportunity for individuals, private corporations, and for our elected representatives to “hear.” With all of my heart, I have hope that our Voice will not bounce off of numb ears and numb hearts. I want each one to accept a bit of responsibility when they “hear.”

The Truth is, childhood cancer research is overlooked and underfunded. The Truth is, childhood cancer researchers must spend many of their working hours applying for grants. I don’t want brilliant pediatric cancer researchers spending their precious time writing grant applications; I want them in the lab, finding causes and cures. Sadly, in the world of pediatric cancer research, this is The Truth. If funding for research is the greatest obstacle standing in the way of ending the suffering of thousands of children, what are we waiting for?

The Truth is, funding for pediatric cancer research is an extreme, high priority for us as individuals, as a country, and as a world. Let’s stand together for action now. Time is of the essence. Children are dying… seven each day in the United States alone.

This is a pledge to our children of today and a promise to children of the future. We are looking into the face of greatness here– greatness in the form of ending human suffering.

That is, our Baby Humans.

                                                                        Photo/Image by Mike Gillette

 

 

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