A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

The capacity to care is the thing which gives life its deepest meaning and significance.

~ Pablo Casals ~

Since I live on the opposite side of the country from New York City, my impressions of the city are mainly what I see and what I hear. It’s funny how humans establish pre-conceived ideas and formulate judgments about what we really know nothing about. We notice when things are different than what we are used to. I can still feel the odd stares from people Melinda and I would encounter the further we traveled from California on our Hope Tours. We were a “California Oddity”!

Likewise, New York City has its very own identity. Some see it as exciting and others see it as cold-hearted. However any of us have perceived New York City in the past, the recent refusal of the Empire State Building to light gold for pediatric cancer awareness has opened the door for the world population to conclude the entire city is heartless.

If we look closer, we see this is far from the truth.

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Lesson 1

New York City establishments care deeply about children with cancer, and they are willing to take action to show it.

As childhood cancer advocates choked and gagged on the initial response from the Empire State Building, other New York locations began stepping up to fill the hole. The world famous Coney Island Parachute Jump jumped in, Times Square said they would go gold, 1 World Trade Center and 230 Park Avenue will be lighting gold. The New York Stock Exchange invited childhood cancer foundation, Frankie’s Mission to ring the bell yesterday!

https://www.youtube.com/embed/HHH2tCb03gY …

For a complete, updated list of those going GOLD, the best place to visit is Tony Stoddard’s “A Day of Yellow and Gold to Fight Childhood Cancer on facebook. https://www.facebook.com/yellowandgoldforcole

“The fallout or should I say “The GoldOut” from the Empire State Building’s refusal to light gold continues! 230 Park Avenue is the Crown Jewel of Park Avenue and it has joined Times Square in announcing it will be lighting gold in September…” for Childhood Cancer Awareness Month. New York City is going all out for our kids!

~Tony Stoddard

Lesson 2

New York City citizens care deeply about children with cancer, and they are willing to take action to show it.

One example of these citizens is a man who happens to be a reporter from Fox 5 New York.  This man has done wonders for helping spread awareness for childhood cancer. He has relentlessly sought to educate the public and to enlist the help of people who might assist in influencing decisions that will bring awareness to childhood cancer. His name is Joel Waldman.

Please follow him on Twitter and thank him for the generous contributions from his heart.

@joelwaldmanFOX5

One of Joel’s tweets:

“One World Trade Center is going gold and Shelby Huff could not be happier. #OneWorldTrade #TallestBuildingInWesternHemisphere #TimesSquare #HelmsleyBuilding #ConeyISland #BayRIdgeBrooklyn #WhoIsNext ? http://www.myfoxny.com/clip/10498073/go-gold

 Melinda Marchiano @1ballerina · Aug 22

@joelwaldmanFOX5 wondering if you know how long the #ChildhoodCancer community has prayed for a reporter with your #Gold heart? #GoGold

Lesson 3

New York City political leaders and major league sports personalities care deeply about children with cancer, and they are willing to take action to show it.

New York Giants coach Tom Coughlin spoke with Joel Waldman about a former player of his who died from childhood cancer. In this same interview, Joel speaks with New York Giant Mark Herzlich about his survival from Ewing’s sarcoma and his puzzlement over why the Empire State Building won’t light gold for a night to recognize childhood cancer awareness in September.

http://www.myfoxny.com/clip/10518032/giants-to-esb-go-gold

New York City Councilman Vincent Gentile Deputy Leader (43rd District, Democrat) has also taken action.

One of his tweets tells about it:

Vincent J. Gentile @VGentile43 · Aug 26

I am introducing a resolution calling on the Empire State Building to GO GOLD for kids with cancer http://www.myfoxny.com/Clip/10511854/go-gold#.U_ysSRtTpm4.twitter … @joelwaldmanFOX5

Speaking with @joelwaldmanFOX5 about my resolution calling on the @EmpireStateBldg to go gold for kids with cancer.

One more New York City Councilman and former NYC public school teacher, Mark Treyger, helped influence the decision for the Coney Island Parachute Jump to light gold in September.

@MarkTreyger718

 Melinda Marchiano @1ballerina · Aug 17

@MarkTreyger718 Wish more elected officials would open their hearts & roll up their sleeves like U! Thank you #ChildhoodCancer #EmpireGoGold

Melinda Marchiano @1ballerina · Aug 20

Huge thanks @MarkTreyger718 for your commitment to #GoGold for #ChildhoodCancer #ConeyIslandParachuteJump http://www.nydailynews.com/new-york/coney-island-parachute-jump-highlight-childhood-cancer-article-1.1907877#bmb=1 … #WhosNext

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It looks from my end of the country that just about everyone in New York is stepping up to make this September a year that we will remember in the childhood cancer community as ground-breaking in raising awareness that will lead to research funding and cures.

New York, I love you! The lessons you have taught me make me adore you. The Empire State Building has chosen to be a Black Hole, but it is crystal clear that the rest of the city has an enormous capacity to care. Not only do you care, you are willing to take the action steps to show it. 

Don’t worry, I am not going to let one bad apple ruin it for the rest of the Big Apple.

It’s time now to click the Frankie Rings the Bell link again and play it over and over. Is it just me? I swear I hear the sound of children laughing and playing.

808

 

 

 

Guest Blogger: Lee Marchiano

 

 

Empire State Building ResponseDear Empire State Building,

It’s true we have had our differences recently. It’s true that “an individual” did request a “tower lighting for childhood cancer awareness.” (Thank you, Tony Stoddard! A Day of Yellow and Gold to Fight Childhood Cancer https://www.facebook.com/yellowandgoldforcole?ref=br_tf.)

What is missing from your statement is the fact that The Empire State Building not only turned down Tony Stoddard’s request, but refused requests from multiple childhood cancer foundations who all applied “responsibly.” What other conclusion is the childhood cancer community to make—other than the obvious? How can we help but conclude that you simply do not care about children with cancer?

You lit The Empire State Building for the release of an Alicia Keys album.

“Wait Til You See My Smile”
When the wind is blowing in your face
Sometimes in life you don’t see straight
Pray to Him, He will show
When your head is in a certain place
Nobody around to make you safe
Stand strong and you will grow
Could it be? Could it be that “the wind is blowing in your face” and you can’t “see straight”?

Or… could it be that you are simply uneducated about childhood cancer? Could it be that your lack of  awareness is the real reason for your refusal? How ironic it is that your lack of awareness is exactly what could be causing the blockade to more awareness! Please, click on this link to learn vital facts about childhood cancer from The Truth 365.

http://www.thetruth365.org/cancer-facts/

Class dismissed.

Would you now please reconsider your decision?

Without a doubt, what would make you change your decision in less than a heartbeat would be for you to actually meet a child fighting cancer. Their utter innocence, their unabashed courage, and their inner strength would melt you. Did you know that current treatments for childhood cancer are equivalent to torture? Did you know that while these children battle for their lives, they are always thinking of others around them and how they are feeling? Have you ever seen the face of a child who looks to you for hope?

Here’s the thing.

You have the ability to bring joy and happiness to these suffering children. You have the ability to shine a light of hope over New York City and our country. You have the opportunity to save children’s lives through awareness that leads to research funding. Imagine—you could be like Santy Claus when these kids see that the Empire State Building has given them a brilliant, shiny, gold gift of hope. You could be a shimmering mirror that reflects the beautiful light that shines inside of these kids.

“Wait til You See My Smile”

As other New York establishments announce that they will be lighting gold for pediatric cancer awareness month in September, like the Helmsley Building, Times Square, Coney Island Parachute Jump, and 1 World Trade Center, I ask you to do the same. A change in your decision will not mean you are weak and crumbling under pressure; it will mean you are strong and growing.

“Stand strong and you will grow.”

If you consider all of this and your decision to light gold for childhood cancer awareness month is still, “No,” then will you please book King Kong to climb up the side of the Empire State Building to spread gold glitter all over New York City in September? #EmpireGoGold

With hope for a world without childhood cancer,

Lee Marchiano

Step up

 

 

 

 

 

 

View from the top of the Empire State BuildingOne of the most dumbfounding realities of raising awareness for childhood cancer is the fact that it is difficult—very difficult—to do. This is not because there is any shortage of passionate advocates who are willing to do the daily, hourly, minute by minute work, but because often—far too often—pleas fall upon deaf ears. I can’t help but wonder if the deaf ears are connected directly to disconnected hearts.

Nowhere in the world of childhood cancer advocacy is this more evident right now than the “No” response that multiple childhood cancer organizations have received to their applications to light the Empire State Building gold for a day in September, National Childhood Cancer Awareness Month.

Childhood cancer foundations and families are livid. They began posting reviews on the Empire State Building reviews page, and just as fast as they began posting them, the reviews were censored and removed. Denying all of the applications—I personally know of ten that were properly filed—is unacceptable. Unacceptable. If you would like to add your own review, please do!

https://www.facebook.com/empirestatebuilding?sk=reviews

One of the qualities I love most about people who advocate for children with cancer is their persistence to keep on in the face of great obstacles. A “no” answer means we keep trying.  People who have jumped in to assist us on Twitter…

joel waldman @joelwaldmanFOX5 · Aug 12

You angry the #EmpireStateBuilding won’t help kids with cancer? #EmpireGoGold http://www.dailymail.co.uk/news/article-2723169/Empire-State-Building-owners-light-landmark-blue-lure-Democratic-convention-New-York-wont-honor-childrens-cancer-research.html … 

T-RawwVerified account ‏@Tyga Aug 12

Crazy theyll light it green for TMNT launch but wont go gold 4 childrens cancer research. Tell @EmpireStateBldg do the right thing #GOGOLD

My imagination cannot help but go to the room where the Empire State Building lighting decision-makers were all gathered.

“Well, let’s see what applications we have here. It looks like we have quite a few requesting the same thing. Do we want to light up gold for pediatric cancer for one night in September?”

Then what? What goes through anyone’s mind after that? What reason could there possibly be to say, “No?” What reason?

So far, there have not been any reasons stating why, which makes their dumbfounding decision even harder to swallow. Let’s see, the Empire State Building lit up blue two nights this week to honor the Democratic National Committee. I understand that New York City is coaxing them to hold their convention there, which means millions of dollars will be spent in their city.

If there was a way the Empire State Building could profit financially from raising awareness for pediatric cancer, I wonder if this would be a reason for it to light gold? This truth breaks my heart and makes me mad all at the same time. I seriously doubt that the decision-makers don’t believe pediatric cancer is a worthy cause. So if it is a worthy cause…

If it is a worthy cause, then please, Empire State Building Decision-Makers, light that building GOLD! Awareness really will mean more money for research and more lives saved.

Light it for Cole, Tony Stoddard’s son. Light it for each child who has courageously faced the Childhood Cancer Monster.

They deserve honor. They deserve our respect. They deserve gold everywhere in the month of September.

They don’t have big wallets, but please, Empire State Building, give them a Free Pass to gold.

#EmpireGoGold

 

 

By Guest Blogger, Lee Marchiano

Childhood Cancer Action DaysMelinda has been applying for scholarships this summer. Usually they involve writing an essay from a prompt. This past week, Melinda took this writing prompt to heart– Who would you like to meet and why?


 

This is Melinda’s response…


 

“I sit on a metal bench, embellished and pleasant to the eye but rather uncomfortable.  Well-tended stalks of lilies color my periphery.  Staring down at my folded hands and resting elbows, I ponder how to break the news to the bench companion on my right.

“So, now what made you choose me as the direct connection you would want to have?”

I tighten my lips and keep the response in my head.  Well…I mean, you are the President of the United States.

Obama, attentive, shoots me a crooked smile.  Silence prompts him to speak again, this time in a more presidential tone.

“I was curious to hear more about how you believe our connection will positively influence the American peop—”

“Well honestly, Mr. President, I didn’t actually choose you.”  A moment of offended speechlessness, then his dignity returns.  I continue.

“I’m sorry, I don’t really know why this happened.  I mean, it’s great to meet you and all, but I guess they just assumed that I would want to be connected to the President.”  With apologetic hand gestures, I attempt to let him down easy.  He bites at the air and nods his head.

“Well…um…I’m very sorry for the confusion.”

My next words seem to fly out a bit to forcefully.

“No, no, no, that’s quite alright!”  I tame my waving hands back into my lap.  Out of the corner of my eye, I can see him settle back further, cross his legs, and stretch out his arm on the bit of bench between us.  His chin is upturned, his eyes darting back and forth.  Oh great, I just insulted the President.  I lean on the armrest—my finger a mustache as my thumb holds the weight of my head.  Hopeless for a good first impression, I find myself blurting out words once again.

“Well, I’m sure you’re a very busy man…have to get back to your office and all.  Um, I know there’s a lot goin’ on…the Middle East…all that.”  By now I’m twisting the knife in my own stab wound.  “And I’m sure it takes a lot out of you being President and all…I’m sure you could use a…a nap or someth—”

“You know, I appreciate that,” he now turns to me contemplatively.  “But I’d much rather you tell me who you did choose and why.”

Silenced, my eyes widen in doubt.  A reassuring and expectant nod encourages me to gather my words.

“Well, you see Mr. President, I was hoping to get connected with Dr. Harold Varmus, you might know him…maybe have had a couple meetings with him, actually.  He’s a Nobel Prize winning scientist for his work on the discovery of the cellular origin of retroviral oncogenes.  I’m not exactly sure what that means, but basically, he’s a very respectable man.  He’s a co-chair of the President’s Council of Advisors on Science and Technology as well—perhaps he’s given you some advising.  Anyways, he was born in New York, followed in his dad’s footsteps to become a doctor, and then even got his graduate degree in English from Harvard.  He’s been faculty at UCSF, and has spent years in laboratories prodding little cells trying to figure out how you and I both work.  Basically, he’s famous for being awesomely smart.  But that isn’t the reason I want to be connected with him.  You see, Mr. President, back in December 2007, a softball-sized tumor in my chest cavity was diagnosed as Hodgkin lymphoma.  It had taken five months to figure it out, and that meant more intense chemotherapy as a result.  The following six months was a blur of four rounds of chemo and three weeks of daily radiation.  I can remember my oncologist packing my whole family into a cramped clinic room to have ‘the chemo talk’.  Basically, it was in my patient rights to know of all the potential side effects, whether I wanted to or not.  Words jumped out—heart attack, kidney failure.  Suddenly just puking my brains out didn’t sound so bad, you know?  The worst part was that I had no choice but to grit my teeth and just step forward.  After the beast of treatment, I thought I was done, but I learned quickly that cancer is not over post-cancer.  A three-year eating disorder due to digestive damage, two trips to the ER in dehydration shock, and multiple visits to various specialists gave me insight into the lasting effects of treatment.  And so now I find myself here, grateful for the research that has been done in order for me to survive, but still haunted daily by physical limitations due to the toxicity of the treatment.  I began to hear the stories of other kids—ones that were diagnosed on such and such date and died four months later because there were no treatments for them.  None.  Not a single thing that could be done or even tried.  Natural entrance into the childhood cancer community has made me aware of some devastating statistics: it’s the leading cause of death by disease in children, nearly 16,000 kids will be diagnosed this year in the United States, 80% of kids have advanced stages when diagnosed as compared to 20% in adults, and over 2/3 of survivors will have life-threatening effects.  But perhaps one of the most alarming to me, Mr. President, was that all of childhood cancer—made up of 100 different types—receives a pitiful 4% of funding from the National Cancer Institute.  And even while adult cancers are getting 96% of funding, they are also receiving a huge chunk of support from pharmaceutical and other large corporations in the private sector.  These commercial giants don’t support childhood cancer because it’s ‘not profitable'; they say that it’s rare.  But 7 kids dying per day…that…that isn’t ‘rare’ to me.  It’s amazing…I’ve seen what has been done with breast cancer, for example, and the progress that has been made because of research.  Pink ribbons are everywhere—not too many people know what a gold ribbon represents.  Every penny childhood cancer receives for research, clinical trials, etc. comes from the NCI and a little army of cancer families and foundations having bake sales and wine auctions.  That just means that childhood cancer deserves more of the NCI’s budget.  This is where Dr. Varmus comes in—he’s the director of the National Cancer Institute…has been for four years now.  He’s extremely influential in the NCI’s decision of how much money is appropriated to various cancers.  I’d love to sit down with Dr. Varmus, share my story and, perhaps, the stories of the other kids and families I’ve crossed paths with.  I’d love to try to express what my heart feels toward childhood cancer and hope that he can take in and have some of it in his own.  I would like to tell him of the incredible, tangible difference that we could make together—for kids pulled out of trials because of lack of resources…for kids terminal at diagnosis because of no known treatments…for survivors that struggle with quality of life and wonder if the fight was worth it.  So, while it is wonderful to meet you, Mr. President, the connection that I believe can have the largest and most influential impact is one with Dr. Varmus.”

I’m only slightly apologetic for my passionate monologue as I once again pacify my gesturing hands.  But then again, he did ask.  Taking a moment, he rubs his chin to aid in processing my swarming words.  He takes a long breath.

“Um…actually, I appointed Mr. Varmus.  I, I know him quite well.”

My hair bobs as I whip my head.  It cocks with inquiry.  Obama carries on calmly.

“Yes, it is one of my many duties as, um, President of the United States, to appoint these kind of people.”  He is now the one turning the air with his hands.

“You want to meet him now?  Stop by his office?”  I’m certain his eyebrows can’t go much higher.  Stunned, it seems I barely get out a nod before we lift off the bench and begin to walk.  Wow, I’m going to meet Dr. Harold Varmus.  Right now.  I’m going to know him.  Imagine what we can do.  My heart does a little dance within me.  Look out, childhood cancer, your days are numbered.”

~Copyright by Melinda Marchiano  

IMG_2479 


 

Something tells me that this imaginary meeting between Melinda and Dr. Harold Varmus may not be imaginary one day. I hope that “one day” comes soon!

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“We Have Just One Wish… #EndChildhoodCancer “

                                                                      ~Hyundai Hope on Wheels

http://tinyurl.com/yc9uo8x 

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Every 36 minutes, one more child in the United States is diagnosed with cancer. Each year there are 15,000 new childhood cancer patients, and there are over 40,000 children who are currently in treatment. Two out of three children who survive will suffer lifelong effects caused from their cancer treatments. Our children need—absolutely need— politicians, celebrities, businesses, sports organizations, essentially everyone who walks the Earth and breathes, to act to #EndChildhoodCancer We are all called to be Gold Spokes in the Wheel speeding its way to cures.

One of the stellar “Gold Spokes” in the “Wheel” on its way to end childhood cancer is Hyundai. On this day, Hyundai is kicking off their 16th annual Hyundai Hope on Wheels program. Over the past 16 years, they have raised over $86 million to fight pediatric cancer. Yes, $86 million! Michelle Williams has recently joined Hyundai to help them in their wish to #EndChildhoodCancer

On April 9th of this year, Hyundai Hope on Wheels announced a $2 million grant they awarded to fund Children’s Oncology Group’s Project:EveryChild. This grant will allow doctors and researchers access to thousands of cancer specimens in an enormous database at the Hyundai COG Biorepository.

http://www.fenderbender.com/FenderBender/April-2014/Hyundai-Awards-2-million-Cancer-Research-Grant/

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“Hyundai’s generous support to Project:EveryChild will make a significant difference in our ongoing battle against childhood cancer,”

“This crucial funding will ensure that every child diagnosed with cancer in the U.S. will be eligible to participate in and benefit from the advances in research from Project:EveryChild, regardless of the rarity of the type of cancer.”

                                                                                        ~Dr. Peter Adamson

                                                Chairman of the Children’s Oncology Group

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Now that we see how this automobile manufacturer, Hyundai, has huge ambitions to help our kids, I HOPE more and more consumers will turn their attention and their dollars to show their appreciation to Hyundai.

Thank you, Hyundai Hope on Wheels! Very best wishes to youth ambassadors, Ashley Burnette and Kenny Thomas!

What’s in YOUR garage?

Kenneth and Ashley National Youth Ambassadors for Hyundai Hope on Wheels

Photo shared from Hope on Wheels Twitter Page  @hopeonwheels https://twitter.com/hopeonwheels

Guest blogger: Lee Marchiano

 

 

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

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

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