Melinda Marchiano

A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Open Letter to All Who Have Ever Helped Children with Cancer

May 16, 2019

Thank you.

Thank you from the depths of my soul.

Without you and your beautiful hearts to help children with cancer, without your sacrifice, the celebratory events of this past Mother’s Day Sunday would never have happened. Without you, our precious daughter would have been taken from this world 11 years ago. Without you, I wouldn’t be sitting here with tears of joy falling freely from my eyes while my huge smile happily hurts my cheeks.

Without you, this day would have only been in my dreams of what could have been. Because of you, this day became reality. And of all days, this day was on Mother’s Day. As parents, we have hopes and dreams for our children, and most of us hope that one day, our child will fall in love and marry the person who has captured their heart.

On Mother’s Day, I had the enormous blessing of seeing our daughter marry the love of her life. The horror and the terror of her childhood cancer treatment could not help but be present in my mind and my heart. Children who have been stolen by cancer and the parents who grieve their loss were present as well. My heart spread all the way across one spectrum to the other.

M and V wedding photo Holy Trinity Veil

As I placed my head on my pillow that amazing night, I scrolled through a few photos I had taken. The emotions I held captive all day suddenly burst through the dam, and the floodgates opened. The stimulus? A photo of Melinda’s pure joy as she dances her first dance with her new husband. In the background, a man looks on with a look on his face that made me wonder what the thought behind that look was. I quickly recognized that his expression says, “I get to see the Happy Ending!” The man? Melinda’s pediatric oncologist, Dr. Dan.

Melinda and V 1st dance wedding

With a most humble gratitude, I thank each of you: doctors, nurses, child life specialists, clinicians, technicians, researchers, and the advocates I am honored to work with every day.

With renewed commitment, I promise to do everything I can to help stop childhood cancer… so all children… and all families… can receive their happy ending, too.

I love you dearly. I owe this joy in my heart to each of you. Thank you!

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“Children are the Fruit of all Humanity”

December 11, 2014

“Every child belongs to mankind’s family

Children are the fruit of all humanity

Let them feel the love of all the human race

Touch them with the warmth, the strength of that embrace.”

~Chuck Mangione, Children of Sanchez

When I first met my husband, Melinda’s dad, he melted my heart by playing Children of Sanchez, by Chuck Mangione, on the piano. I loved this song from the first time he played it, and I have recently rediscovered it. It brings back to me all the familiar feelings from long ago– before I was married and before our three children were born. At the same time, this beautiful song has now taken on new meanings as life experiences have piled on over the years.

My love for children has always been strong, but having the experience of being engulfed into the world of childhood cancer has only made that love stronger and more powerful. My contact with children fighting cancer and families and caregivers over the past few years has impacted my life in ways I will forever be grateful for. I credit them with teaching me to look at and value the Ends of the Spectrum of Life. At one end is the ultra-meaningful and at the other is all-out-silliness, whose only meaning is pure joy. What lies in the middle is the mediocre of life and what lies at each end is what life is all about.

For those leaders in the childhood cancer community who take on the challenge of pushing forward for awareness, research and cures for our “fruit of humanity,” I thank you. If we don’t take care of our children, our “fruit,” we are nothing but empty and barren.

Every child really does belong to “mankind’s family.” For too long, our society and our government have turned away from viewing the gripping and horrid realities of childhood cancer. Cancer is the number one disease killing children in our country. Seven children die each day. Two new drugs have been developed specifically to treat childhood cancer in the past two decades. Two.

Children need progress. Time is not a luxury in the world of children fighting cancer.

With a grateful heart, I share this news of promising progress from Mark & Ellyn Miller of Smashing Walnuts Foundation about the Gabriella Miller Kids First Research Act:

https://www.facebook.com/smashingwalnuts

“GREAT NEWS!!
THIS JUST IN…

Our Sweet GG did it! Thirteen and a half months after Gabriella died she moved our Congress to come together for our children battling disease. Congress “stopped talking and started doing”!

The Gabriella Miller Kids First Research Act has made it into the government funding Bill that the House and the Senate will vote on THIS week!! The section of the Bill that includes the GMKFRA is 177 pages long. The link below includes a summary of each section of the legislation. Not only is the GMKFRA included in the legislation but it is prominently featured in the three page summary attached below!

Thanks to so many individuals and organizations, working together towards a common goal, we succeeded the first time out the gate! Thank you and congratulations! We did it! We have made a tremendous difference in the world of childhood disease research!”

#GabriellaMillerKidsFirstResearchAct #GabriellaMiller #SmashingWalnuts #TalkIsBullshit #ItsNotOk

appropriations.house.gov

$12.6 million!

Let’s encourage our elected leaders to continue to sharpen their focus on childhood cancer. Thank them for their votes this week to include GMKFRA in the FY 2015 Omnibus.

Thanks to Four Square Clobber Cancer for letter assistance…

http://4sqclobberscancer.com/2013/02/24/dear-congressman/

“Give me love and understanding, I will thrive

As my children grow my dreams come alive

Those who hear the cries of children, God will bless

I will always hear the Children of Sanchez.”

~Chuck Mangione

Guest Blogger: Lee Marchiano

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Why I’m Rooting for the Kansas City Royals in World Series Game 7

October 29, 2014

Game 7 of the World Series is tonight!

I live on the Central Coast of California, three hours north of Los Angeles, and four hours south of San Francisco. You might guess that I would be routing for the Giants to win this evening, but this is not so. I admit I am a big Hunter Pence fan, but my heart and my cheers will be with the Royals tonight.

Why would a California girl not be cheering for her California team?

Besides being a big baseball fan my entire life, I am also a fan of “teams” founded to fight childhood cancer. One of my very favorite childhood cancer fighting “teams” is Braden’s Hope for Childhood Cancer. Melinda and I met Deliece Hofen, the founder of Braden’s Hope, four years ago. At the time, Deliece was in treatment for breast cancer while her son, Braden, was in treatment for Neuroblastoma.

Deliece is one of the brightest shining stars I have ever met on this Earth. Although she has had a mountain of challenges heaped upon her life, she has climbed to tremendous heights through her positive attitude, her beautiful faith, and her undying determination to help others. I love this woman.

Because of her tenacity, her persistence, and her utter brilliance, she has been able to help save her son’s life. Braden is a walking miracle. Deliece is a walking miracle herself!

Whatever could all of this have to do with the World Series tonight?

Braden’s Hope for Childhood Cancer is located in Kansas City. The Royals have always been huge supporters of this foundation. Before baseball games begin in Kansas City, the enormous screen with a crown sports a photo of Braden and George Brett laughing together while offering a Braden’s Hope Calendar for sale. The calendar has photos of “Hope Heroes” with Royals players. All proceeds go to helping Braden’s Hope for Childhood Cancer fund vital research for cures for our kids.

I love the Royals for their dedication to helping their local childhood cancer foundation, Braden’s Hope for Childhood Cancer. Being a major league baseball player comes with many perks. It is refreshing to see these players use their position of sports celebrity to spread human kindness into the world of suffering children. It’s the right thing to do.

What could make me change my mind? Hmmmm….

Maybe the Giants can begin supporting Unravel Pediatric Cancer, one of their local childhood cancer foundations started by another “mama” I love, Libby Kranz.

You see, I love watching baseball, but I love witnessing big hearts in action for kids with cancer even more.

Go Royals!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Braden Hofen and George Brett

Shared from: https://www.facebook.com/photo.php?fbid=10152654749620970&set=pcb.10152654758315970&type=1&theater

Guest Blogger: Lee Marchiano

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Support for Noah’s Light Foundation and the NOAH Protocol

October 28, 2014

Janet Demeter, Executive Director of Jack’s Angels Foundation, at Night of Golden Lights at the White House, CurefestDC

The Founder of Noah’s Light Foundation, Amber Larkin, received notification on October 23, 2014 that the Food and Drug Administration granted The University of Texas MD Anderson Cancer Center approval for a new pediatric cancer treatment developed to treat pediatric brain cancer, called the NOAH Protocol. This is remarkable and thrilling, offering new hope for groundbreaking results that have eluded researchers for three decades. For some horridly aggressive types of childhood cancer diagnoses that have a 0% survival rate, this is the best Halloween “treat” that could ever be created!

“Noah was diagnosed just before Halloween trick-or-treating, and it’s only fitting that we’ve received FDA approval to begin testing this month. Long before I lost my son to cancer, I knew that there had to be better treatments through personalized cell therapy – using your own immune system to help fight the cancer. His illness has defined the rest of my life. There are so many more ‘Noahs’ out there, and I now do this for each and every one. My wish is that the NOAH Protocol becomes a catalyst for the cure for all cancers.” ~Amber Larkin

The NOAH Protocol was named after Amber Larkin’s son, Noah, who fought medulloblastoma and died in 2012 when he was just eight years old. Ever since, his lovingly determined mom, Amber, has been on a mission to create hope and change for all children diagnosed with pediatric brain cancer. NOAH stands for New Opportunity Advancing Hope. For children battling childhood cancer, there is no greater hope than a possible cure. For survivors of childhood cancer, there is no greater hope than less toxic treatments which will both heal and preserve their future health. The sound of “Immunotherapy” instead of “Chemotherapy” is like a hymn sent straight from heaven!

For more detailed information:

https://www.noahslightfoundation.org/the-noah-protocol/

“The NOAH Protocol (NewOpportunity AdvancingHope) is groundbreaking, advanced immunotherapy to treat children diagnosed with brain cancer. Until this treatment, chemotherapy had to be administered in extremely high doses to the entire system so that it could breach the blood-brain barrier, a protective layer that surrounds the brain. Radiation is aimed at the entire brain, damaging healthy cells in the process and rendering younger patients who survive unable to read, tell time or tie their shoes.”

Knowing that this treatment will treat cancer at the tumor site, without toxic chemotherapy and radiation, makes me fill up with tremendous hope for the future of our children’s health. Imagine…

Oncologists will use patients’ own cells, cells called NK, or natural killer cells, to fight their tumors. A unique surgical technique implants these cells directly through a port at the cancer location. The Killer Cells then do the job they are trained for; they kill cancer.

Dr. Ronald DePinho, President, MD Anderson Cancer Center

Dr. Ronald DePinho, President of MD Anderson Cancer Center, speaking on pediatric cancer therapy development issues at the Congressional Childhood Cancer Caucus on September 19, 2014

It is not surprising to me to learn that this huge step forward is due in large part to the love of a mother for her son. Brains and research funding are vital components for moving forward for cures for all children with cancer, but love will always be the driving force that binds everything together for great advances. Without love, data is simply data.

Without love, this fantastic new hope for treating pediatric brain cancer would not even exist.

Don’t you just love the love of a mom?

You can support Amber Larkin’s mission by voting daily for her to receive the BJFH Award of $100,000 for Noah’s Light Foundation.

http://NASCAR.com/award

Sample Tweet to vote, copy, paste, and share, share, share!

I voted 4 #AmberLarkin @NoahsLight #BJFHAward finalist to win $100,000 4 @NoahsLight Cast your vote: http://NASCAR.com/award daily #ChildhoodCancer

Janet Demeter, Executive Director of Jack’s Angels Foundation at the Congressional Childhood Cancer Caucus

Guest Blogger: Lee Marchiano

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Curefest DC 2014 on the National Mall– Photo Memories

October 2, 2014

After 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.

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.

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

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.

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

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

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.

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

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!

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

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!

Guest Blogger: Lee Marchiano

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A Night of Golden Lights at the White House- CurefestDC

October 1, 2014

After 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.

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.

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.

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

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.

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.

Guest Blogger: Lee Marchiano

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Curefest DC Welcome Event at Nationals Stadium

September 30, 2014

If you missed CurefestDC this year, you can always begin planning for next year’s event that will take place on September 19th and 20th, 2015. After attending this year, I find it is a must for me to begin planning on attending next year as well.

The Welcome Event at Nationals Stadium was a wonderful time of entertainment, fun games, great food, and treasured times meeting others. Thank you to Arms Wide Open Childhood Cancer Foundation, Stillbrave Foundation, Smashing Walnuts Foundation, Children’s National, and Kyle’s Kamp for sponsoring the event! Families were decked out in their foundation and team support t-shirts. As we entered the stadium for the CurefestDC event check-in, the National Angel Quilt was gorgeously displayed. I had read about the emotional impact the quilt has on those who see it for the first time. I felt I was “ready.” There is nothing that can prepare one for this. On first glance, it is massive. The sheer size of the quilt speaks volumes about how many kids have suffered and died from childhood cancer. Seeing the children’s faces and reading their birth and death dates…

At first, I felt I couldn’t breathe through the huge lump in my throat. Then, I had to stand back against the wall. As my body finally breathed in a breath, it came back out of me in a whimper. The whimper took over. It felt like I breathed in each one of those children’s souls and breathed out their suffering. I stood back to weep, not caring who saw me, not caring what anyone thought. My thoughts were, “This is why we are here. This is why we all need to step up for research for cures.”

National Angel Quilt

The Welcome Event was super-kid-friendly. Kids enjoyed a bounce house and lots of crafts and games. For some reason, they would not let me in the bounce house (ha ha!) This meant I needed to go back to the food table and eat an icing-topped cookie that looked like a baseball. Yum! The entertainment was spectacular; I was happy to see and hear Nicole Ricken perform again and to see her sister, Alyssa as well.

Nicole Ricken performing at CurefestDC 2014 Welcome Event

The fun went on and on, with Tattoo Tom Mitchell from Stillbrave Foundation spreading joy and tattoos. I am officially tagging Tom as a Kid-Magnet!

Tattoo Tom spreading joy and tattoos

“One day, the whole world will feel the touch of gold.”

~Dr. Irene Koesters

Curefest Welcome Event — One Voice for Childhood Cancer

The very best thing about the Welcome Event?

Voices for childhood cancer combined with action against childhood cancer.

Know what? This is a deadly combination for childhood cancer.

Keep it up.

Guest Blogger: Lee Marchiano

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“With Blessing Come Sacrifice” Making Childhood Cancer Advocacy History at the White House

September 25, 2014

This September– this Childhood Cancer Awareness Month– is one that will be remembered as pivotal in the history of childhood cancer. Because of the inexhaustible efforts of a few dedicated childhood cancer activists, last Friday, September 19, 2014, became a monumental step toward more funding and support for pediatric cancer research. For the very first time in history, the White House Office of Public Engagement opened its doors with an invitation to a small group of childhood cancer advocates to attend a Briefing and Discussion with Pediatric Cancer Advocates.

Prior to this meeting, I attended the 5^th Annual Congressional Childhood Cancer Caucus, hosted by Co-Chairs Congressmen Michael McCaul and Chris Van Hollen in the Congressional Auditorium, Capital Visitors Center. The mission of the caucus is to bring awareness to childhood cancer. Congressman McCaul spoke of his best friend in school who died from leukemia and the impact it has had on his life. He added that his wife is also passionate about the issue of childhood cancer. Congressman Van Hollen spoke next, encouraging all of us to come up with new ideas on how we can “tackle and defeat” childhood cancer in light of plummeting funding from the NIH in recent years.

One of my favorite speakers of my entire time in Washington, D.C. was the next speaker at the Childhood Cancer Caucus. Dr. Francis Collins, physician, geneticist, respected scientist, and accomplished guitar player, spoke eloquently about how “exhilarated” he is by science and new things happening. His caring heart was clearly evident.

“We have to pull out every possible stop.”

~Dr. Francis Collins / Director, National Institutes of Health

He explained how cancer is a disease of the genome, or “misspellings in the DNA Instruction Book.” He added that every cancer is different which means every cancer needs individual treatment. Further, he spoke about the Cancer Genome Atlas, TCGA-Pediatric Cancer Genome Project, TARGET, Oncogenes, how the cost of Human Genome Sequencing has dropped drastically, Immunotherapy, and the effects of the 23% funding cut to NIH. Scientists who are considering research in the field of pediatric cancer face the reality that only 16% of grant applications receive funding. This means we are chasing the best and brightest researchers away from childhood cancer research when we desperately need them! When we find a way to allow our brilliant, passionate scientists to perform their research without spending tons of their time writing grants that will never be funded, there will be great advances!

Dr. Collins closed by comparing our joint mission for cures for all children with cancer to a symphony where all of us work together. He asked, “Push us.”

“I give my word I will do everything I can…”

~Dr. Francis Collins/Director of the National Institutes of Health

I believe Dr. Collins when he says he will do everything he can.

After the Caucus meeting, there was a luncheon to honor the Childhood Cancer Congressional Caucus in the Rayburn House Office Building. What an enjoyable time it was connecting with so many other advocates I have only known from communicating online!

Post lunch, it was time to head to the White House. After a taxi ride with Ellyn Miller (Smashing Walnuts Foundation) and Tatto Tom (Stillbrave Foundation,) I met—for the very first time—Tony Stoddard (A Day of Yellow and Gold to Fight Childhood Cancer.) What it meant to me to look into this man’s eyes and thank him for all he has done and all he is doing cannot be expressed with our current English language. The meeting with the White House Office of Public Engagement would not have happened without this man’s passion to help children with cancer.

With Tony Stoddard before going through security at the White House–

Bob Pinewski (PAC2) and Rob Whan (Caleb’s Crusade)

What we truly need right now to be able to use the current forward momentum are collaboration and cohesiveness. As a community, we need to act, speak, and step as one. Our elected leaders in Washington, D.C. are beginning to hear our collective voice.

As Childhood Cancer Awareness Month winds down, and pink ribbons and bows begin their beautiful displays, we need to step up our advocacy and activist efforts. We need to recognize this moment of opportunity and seriously jump on it. It’s time for us to combine forces with industry, scientists, and advocates to create change. It’s time to abandon old, toxic treatments and usher in “Precision Medicine” that will heal and not harm our children.

September 19, 2014 is a day I will always remember. The doors of the White House opened to the needs of childhood cancer. I am greatly blessed to have been an invited guest on this historical day.

As the King of Siam says in The King & I,

“With blessing come sacrifice.”

With pleasure, I will sacrifice for cures for all children with cancer.

You with me?

Beth Anne Baber, Ellyn Miller, Tony Stoddard, Lee Marchiano, Joe Baber, Maureen Lilly, Ruth Hoffman and Andy Mikulak

Guest Blogger: Lee Marchiano

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Dear Cincinnati Bengals – Coming Together For a Greater Purpose

September 15, 2014

Austin Munoz –Moorpark Football Senior Night

Dear Cincinnati Bengals,

Thank you.

As a parent of a childhood cancer survivor, I praise your recent decisions surrounding Devon Still and his daughter, Leah, who is fighting stage 4 neuroblastoma. No one knows the darkness of those words, “Your child has cancer,” than parents who have heard them. No one knows the hopelessness, the despair, the panic, or the chaos of that moment than parents who have lived it.

_________________________________________

“Dealing with cancer is like a whole different world.”

~Devon Still

_________________________________________

What you have chosen to do is a mark of excellence. Your decision to retain Devon— even when his mind and heart were quite understandably elsewhere— is top-notch. Your organization’s decisions demonstrate the strength of character, compassion, and integrity of those in your front office. If I could, I would hug each and every one of you. As I did, you would see the tears in my eyes that are now rolling down my cheeks. It’s hard for me to believe that not everyone makes choices like you have. It touches me deep into my soul to see you have chosen humanity over financial gain. I believe you will see this is a wise choice as well in the not-so-long-future. Devon will become an even better player than he has ever been. Once you have witnessed your child fight for their life, you become a warrior too… one who will move the heavens and Earth to accomplish your goals.

Cincinnati Bengals, you are one class act.

And you haven’t stopped there. Not only have you retained Devon, but you have gone an entire football field farther by stepping up to raise money for pediatric cancer research! This is a gift that will save children’s lives!

Leah will be in my prayers. Devon, his wife, and his family will all be in my prayers. The entire Bengal organization will be in my prayers of gratitude.

Thank you for kicking childhood cancer out of Paul Brown Stadium!

May many other organizations follow the lead you have taken. You have set a fine example of coming together for a greater purpose!

With sincere thanks and squishy hugs,

Lee Marchiano

Momcologist & Childhood Cancer Advocate

“It’s not all about competition. It’s not all about what you can do on the field, but we come together for a greater purpose.”

~Devon Still

youtu.be/xl0sjEWKYI8

Photo shared from Twitter @dev_Still71

______________________________________________________________________________________________

http://www.cincinnati.com/story/sports/nfl/bengals/2014/09/14/cincinnati-bengals-devon-still-leah-still/15647737/

Help the Bengals SACK PEDIATRIC CANCER

https://www.pldgit.com/campaign/768450939739702307

Devon Still jersey– $15 goes to pediatric cancer research. (Over $400,000 raised in just four days!)

http://www.cincyshirts.com/cincyshirts//still-strong-devon-still-shirt.html

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Uh-oh! Facebook Warnings! Is this Censorship?

September 12, 2014

Yesterday, I received an email from Facebook entitled, “Facebook Warning.” It read:

“Hello,

A review you posted has been removed. Reviews must follow the Facebook Community Standards and focus on the core product or service offered by the Page. Reviews that don’t follow these guidelines may be removed. Please keep in mind that people who repeatedly post content that doesn’t follow our guidelines may lose access to their accounts.

The Facebook Team”

At first, I was puzzled, especially puzzled because I don’t have a Facebook account. Then, I remembered how I “borrowed” Melinda’s Facebook account so I could leave a review on the Empire State Building’s page a couple of weeks ago. I wrote about how Melinda and I had celebrated her five year anniversary from her diagnosis there. (Does this qualify as a “focus on the core product or service”?) Then, I questioned why they decided not to light gold, asked them to reconsider, and gave them a 1 star rating.

I don’t think the Empire State Building owners like those one star ratings.

Was removing my review censorship?

Moreover, was Facebook’s removal of over 6,000 1 star ratings on the Empire State Building’s Facebook Review Page censorship?

The following update and photos are shared from Empire Go Gold Official Facebook Page:

“Since our post on August 28th showing the drop in The Empire State Building‘s rating on their Facebook page, OVER 6,000 ONE-STAR RATINGS have been deleted from their page. We’re also hearing of 5-star ratings being deleted if they mention anything about #GoGold in them. Those that posted reviews have received a message from Facebook saying their review doesn’t meet their rating standards. In addition, if the user continues to post, their account will be shut down. Is this censorship?” #EmpireGoGold

https://www.facebook.com/empiregogoldofficial

________________________________________________________________

‘I have been blocked from all activity on that page for some reason.’

~Tony Stoddard

https://www.facebook.com/yellowandgoldforcole

________________________________________________________________

Gotta love Tony’s sense of humor on that one!

What is particularly disturbing is that Facebook has “taken sides.” What are review pages for? If a “business” does not like their reviews, they get to cry foul and then have the honest, negative posts removed? I am more than puzzled now; I am mind-boggled.

What???

The entire #EmpireGoGold scenario has become rotten. It stinks. It stinks of censorship. It stinks of greed. There are more and more posts from childhood cancer advocates who want nothing to do with the Empire State Building ever again. It seems from reading the current posts on the Empire State Building Facebook Review Page that it is not just those who have been sucked into the world of childhood cancer who feel like this, but the general public as well.

“Sad yall are deleting and reporting people’s ratings to save your 5 star reputation on here I know this will be reported and removed as my last post was glad to see yall are so patriotic tht yall silence everyone’s right to free speech because yall are to sorry to turn a light switch on and join the rest of the world” #empiregogold Jesse Morton

“Don’t waste your time. Go to the Freedom Tower (1 Word Trade Center) better views, nicer people, history, lots more to do in the area.” Laura Gottlieb

“Keeping with policy I will focus on the building itself. Overpriced admission to observatory. The gift shop once again is over priced and sells items you can find in a gift shop at street level for a fraction of the cost. The building smells. The staff crams you in the elevator like sardines. We won’t ever be going back. It’s an OK view but certainly not worth the cost of entrance and hassle with the staff who are not very pleasant.” Brad Johnson

“A poorly run landmark that I used to have high regard for years ago. Crowded, unpleasant staff and horribly overpriced. Check out Top of the Rock instead. Less crowded and frankly a more beautiful view.” Alaric Hahn

“I am not a foundation, I do not have a child with cancer. Yet I am so saddened that you won’t rise above and go gold this month for childhood cancer. You had a lot of requests from not one foundation, but many. You posted a statement stating you were not going to be bullied and dug your feet it. It is not about being bullied, or having adults angry at you. It about the Children with cancer. Children who might not be here next year to see if you go gold next year.
Please, please take the high road, head up shoulders and do the right thing for the children. Please Go Gold…” Christine Greig

And then… this gem of a review:

The ESB should stop wasting so much energy deleting posts and start dealing with this like adults. Your initial response, which took weeks to develp, was innacurate and was retracted. I think its’s time that a human representative from the Empire State Building steps up and speaks out on this issue. For now, the wizards behind the curtain at esb continue to look like cowards. Colleen Bogle

Gosh, I wonder if there is a “human representative” from ESB?

Would you like to post your very own review?

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

Censorship?

What sickens me most about all of this is the silencing of people who are voices for children with cancer.

Newsflash! Childhood cancer advocates will happily trade in their Facebook accounts if it means saving children’s lives.

You can take away our “microphone,” but you cannot keep our voices silent.

Guest Blogger: Lee Marchiano

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A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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