A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Tony Stoddard’

Curefest DC 2014 on the National Mall– Photo Memories

Curefest 2014 422After two days filled with inspiration  in Washington D.C., a third followed. CurefestDC 2014 began at 9 am on Sunday, September 21st on the National Mall. My decision not to brave the “waters” of the dreaded metro by myself on this morning proved to be a good one. I gobbled some breakfast in a taxi on the way and arrived with a full belly and a happy heart.

Festive is the word I would use to describe my first impression. My second impression was thankfulness for all the people who came, all the people who worked to create the event, and all the volunteers who donated their time to put this enormous event together. 

The setting for CurefestDC on the National Mall made everything that was there and everything that happened a notch or two more epic. Backdrops of the Capitol Building and the Washington Monument have a way of doing that. I understand there were more than 75 foundations present under the white pop-ups lining the mall. 

This was a day for the kids. I loved seeing kids scurrying around collecting as many wristbands as they possibly could. They hugged each other, sat on each other’s laps, walked, danced, and some even spoke. Survivors and siblings were honored and received special gifts.Curefest 2014 441

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One of the most fun and heart-warming times of this day was a butterfly release. Families were given boxes to open and free the butterflies inside. The look of wonder, awe, and joy on the kids’ faces was alone worth the trip to D.C. Before opening the boxes, Ellyn Miller told the crowd, “These butterflies are for all of our kids.” With that, they gave their boxes a kiss, then opened them up to reveal the life within.

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 Abby Miller sang the National Anthem while Delaney Clements held our nation’s flag. The walk began…

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The camaraderie present was something so strong that it seemed possible to physically touch it. The gorgeous somber and reflective tone of the night before at the White House transformed into a tone of courage, love and purpose– even joy. 

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Dancers danced in honor and in memory of children fighting cancer. Here, dancers hug Delaney Clements after their performance.

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Joel Waldman, from Fox 5 NY, received an award of recognition and thanks for his outstanding work to bring awareness to childhood cancer.

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Gabriella Miller’s mom, Ellyn and Erin Griffin’s mom, Amanda, had their heads shaved at the event to bring more awareness to childhood cancer.

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Billy Sherwood, crazy-cute and courageous survivor, helping at his mom’s booth for Arms Wide Open Childhood Cancer Foundation.

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I remember– I will never forget– how much Melinda hurt inside when she was in the middle of her cancer battle and she was not able to dance. This moment at Curefest brought back memories of pain, and at the same time it crushed those memories with the victory I witnessed when Gabi Shull took the stage and danced. Oh my gosh! Beautiful Gabi! 

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Thank you to Alvin Jones, Master of Ceremonies with a huge heart for the kids.

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The man who is turning the world gold #WorldGoGold, Tony Stoddard (Cole’s Dad) stands with Amanda Griffin (Erin’s Mom).

Like I mentioned at the beginning of this post, there is something epic about the setting of CurefestDC. Do you notice what is directly between Tony and Amanda in the photo above? Hello, elected representatives, childhood cancer activists are more organized and more determined than ever before to have you listen to our One Voice to create change for childhood cancer. We need cures right now for all kids.

Like ten year-old Gabriella Miller so eloquently stated, “Talk is bullshit, we need action.” 

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

It’s not okay to sit back, flap our gums and do nothing. CurefestDC gave all of us an opportunity to do something. I think CurefestDC inspired everyone who was present. There is no greater cause than the health of our children. There is nothing like spending the weekend with people who know this is true. 

CurefestDC was one huge blast of hope and inspiration. 

Don’t worry, Gabriella, we’re going to do a LOT more than talk!

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Guest Blogger: Lee Marchiano

 

 

 

 

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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 Cancer) Our 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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The Beginning of the End of Childhood Cancer

A Day of Yellow and Gold Times Square“Cole, you are doing something big, my son.”

~ Tony Stoddard

Today is a day of gratitude.

All I can think of is Tony Stoddard and his son, Cole.

All I can think of are the children who have suffered through childhood cancer and all the people who love them.

September—Childhood Cancer Awareness Month– is here. Those long days of hard work by childhood cancer advocates all year long are beginning to bear fruit. Last night, New York City gave every one of us who has been sucked into the world of childhood cancer a treasure. You see, we know how hard these children fight, and we have witnessed how they suffer. Our dearest friends are parents who have endured the worst of the worst. How can any of us even imagine our child looking to us, like Cole did, saying they will never grow up to do anything?

Seeing 1 World Trade Center, the Helmsley Building, and Times Square light gold for childhood cancer awareness does something inside me I cannot even describe. It makes me cry. The tears are tears of sadness, joy, and hope all tangled together in one big ball.

http://www.myfoxny.com/clip/10541893/times-square-goes-gold

This my friends is the beginning of the end of childhood cancer.

Cole, you are doing something VERY big. Your daddy’s love for you shines bright, glittery gold. Dear little boy, you are helping us all to do the right thing.

We will not relent. In fact, we will join forces.

Yes… the beginning of the end…

Thank you, Cole. 

 #GoGold #WorldGoGold #EmpireGoGold #Gold4KidsCancer 

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Guest Blogger: Lee Marchiano

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Three Lessons about NYC from the Empire State Building’s Refusal to Light Gold for 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.

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Guest Blogger: Lee Marchiano

 

 

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Childhood Cancer, The Empire State Building, and King Kong

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

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Empire State Building, Why Won’t You Light Gold for Childhood Cancer?

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

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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

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Mr. Jon Lester, Please Meet Mr. Tony Stoddard. Light Major League Baseball Gold for September

 

Red Sox Pitcher Jon Lester

Red Sox Pitcher Jon Lester

There was a story in the news last week that grabbed my attention because our family is what you call “a baseball family.” Melinda’s brothers played Little League ball, her dad coached, and she sat in the stands for countless games, cheering her brothers on. My first trip to a major league baseball game was to see the Red Sox play at Fenway Park in Boston in the late 1960’s. Gosh, do I ever I remember the excitement of seeing the Green Monster and my favorite player, Yaz—Carl Yaztremski. So, when I read last week that Boston Red Sox pitcher, Jon Lester, is raising money and awareness for pediatric cancer, my Red Sox Fan Meter went sky high.
Jon Lester was diagnosed with non-Hodkins Lymphoma in 2006; now he and a few of his teammates, along with players from other teams, are working on a project called “Never Quit” to encourage children battling cancer. For many children, meeting a major league ballplayer would be the thrill of a lifetime. For children in cancer treatment to be able to meet Jon- a cancer survivor himself- has got to be highly inspirational and even healing.

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“Lester has big plans to expand the program, in Boston and beyond. He hopes to bring in players from other sports to help, especially in cities that don’t have baseball teams.”
                                                                                                                                                                      ~Don Fair, coordinating producer of Fox News’ Los Angeles bureau

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Is there anyone else thinking what I am thinking? I think Mr. Jon Lester needs to meet Mr. Tony Stoddard. In case you missed yesterday’s post about what Tony Stoddard is doing to help children with cancer, you must know!
https://gracemelinda.com/2014/04/07/a-day-of-yellow-and-gold-to-fight-childhood-cancer-tony-and-cole/
Every time I hear of someone using their lives to help children with cancer, it inspires me and encourages me to do the same. Whenever I join with others who feel strongly about the importance of making a change in the world of childhood cancer, the results of the outcome of our work jumps exponentially. This is what will happen when Jon and Tony meet. Tony, I think Jon might know one or two people in the Front Office at Fenway Park. I think Jon might know a bit about how one would go about Lighting Major League Baseball Stadiums yellow and gold for Childhood Cancer Awareness Month in September.
And the best news of all, Tony, I will bet—I will double-down—that Jon has a heart that is willing to help you make this happen. Jon, will you please help honor these warriors? Will you please help Tony spread awareness that will lead to funding for cures? From the work you have already done, you’ve demonstrated you feel our children are worth every bit of effort and sacrifice. Thank you for all you are doing, Jon, and thank you for your consideration to step up to the plate to accomplish even more… for Tony… for Cole… for all the kids who should never have to face the Monster. The only Monster I want our children to face is that big Green One I marveled at as a kid at Fenway Park!

http://www.foxnews.com/sports/2014/03/31/opening-day-ace-jon-lester-hopes-to-shut-out-childhood-cancer/?intcmp=latestnews

Tony and Cole

Tony and Cole

Guest Blogger: Lee Marchiano

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