A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Pediatric Cancer Research’

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.

808

 

 

 

Guest Blogger: Lee Marchiano

 

 

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“A Day of Yellow and Gold to Fight Childhood Cancer” Tony and Cole

 

“A Day of Yellow and Gold to Fight Childhood Cancer”

What a world this would be if…

…if we would choose to take care of our children first.

Tony Stoddard is a leader in the world of childhood cancer advocacy, believing our kids deserve the best we can provide. Melinda and I have great respect for this man, his mission, and his brilliant campaign to color our country gold for Childhood Cancer Awareness Month in September. Along with Tony, we honor the memory of his son, Cole.

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“This past September I was mired in grief at the loss of my precious five year old son Cole. He passed away from neuroblastoma cancer on January 20th 2012. I created my page “A Day of Yellow and Gold to Fight Childhood Cancer” to honor the memory of my son Cole and all children who have faced the monster that is Childhood Cancer.
I am determined that we will never go through another September without the gold of Childhood Cancer Awareness shining everywhere. Without awareness childhood cancer will remain underfunded and ignored, leaving many thousands of children to continue to suffer through antiquated treatments and to have less than the best chance to survive this monster. I am unwavering in my attempts to see gold each September on town buildings, on the White House, on the fields of the NFL and MLB, on ribbons worn by celebrities, politicians, and media personalities. I want to see as much gold in September as we see pink in October! Our children need and deserve this!”
                                                                                                                 ~Tony Stoddard, Cole’s Dad

  (From People Against Childhood Cancer (PAC2) website)

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I am not sure where or when the motto, “Women and children first” went out of style. I have a sneaky suspicion it left the moment our nation decided money is paramount. I have suspicions it left because treating children with cancer is not a profitable business, unlike treating adult cancers. I suspect it left because we have lost ourselves in adult selfishness.

Today, I ask you to take a stand with Tony for Cole. Take a stand with Tony for all the children who have fought, have suffered, and have taught us that they are worth every bit of “guts” we need to spill to see they receive a much different future. Tony is right. Without awareness, kids with cancer will continue to be treated with “antiquated treatments,” and funding for research will remain frighteningly low. If you haven’t already, please like Tony’s page to color our country yellow and gold. While you are there, tell him how much you appreciate what he is doing for our children. Tell him his heart and the “guts” he is spilling for our dear children are making a difference. Steer your heart under Tony’s wings and help his mission to end childhood cancer soar!

https://www.facebook.com/yellowandgoldforcole

https://twitter.com/smilesforcole @smilesforcole

Smile, Be Happy (Cole’s Song)

https://www.youtube.com/watch?v=ZSn2WcSo9fc

untitled (3)

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Advocacy Opportunity!

Please give a few moments of your time to be an advocate for kids with cancer.

From Kids V Cancer Facebook page today:

#endchildhoodcancer “Please post this pic and put the hashtag #endchildhoodcancer on your status. For every photo shared Hyundai will pledge another $1 to AACR Pediatric Cancer Programs, up to $5,000… as many times possible until Wednesday!”

https://www.facebook.com/kidsvcancer?hc_location=timeline

Can you say "Viral"?

Can you say “Viral”?

 

 

 

                   Ready, set, go!

 

 

 

 

 

Guest Blogger: Lee Marchiano

Melinda will be back soon!

 

 

Delaney Clements, Kamryn Renfro, and a St. Baldrick’s Shave Challenge for Caprock Academy

Kamryn Renfro has taught our entire nation a lesson in friendship. Just 9 years-old, she shaved her head in solidarity for her friend, Delaney Clements, who is battling cancer. Like I wrote yesterday, kids teach us. I imagine what a great friend Delaney must be to Kamryn for her friend to want to do this for her, and I applaud the compassionate selflessness Kamryn showed with her beautiful act of love for her friend. However, Caprock Academy, the school Kamryn attends in Grand Junction, CO, sent her home on Monday, stating she was violating their dress code. She could come back if she wore a wig.

The dress code “was created to promote safety, uniformity, and a non-distracting environment for the school’s students,” Catherine Norton Breman, president and chair of the academy’s board of directors, said in a statement.“

There is so much wrong with this, I do not even know where to begin!

Number 1:

I do not understand a school “dress code” that does not allow “bald heads.” There are people who cannot help being bald—including kids with cancer. Are we actually this unaware that kids get cancer? Is it not enough that children stricken with cancer have to lose their hair? This “policy” is antiquated. Will Caprock Academy send a child who is fighting cancer home until they come back with a wig? Ugggggggh! Please, Caprock Academy, strike that policy down now!

Number 2:

Hello, compassion? This is a crystal-clear example of selflessness. This is a brilliant example of friendship at its best. I would love to see Kamryn honored rather than reprimanded. I would love to see Delaney honored for the beautiful person she must be to have a friend who loves her so. These are the exact values we need to be teaching our youth. Let’s make an example of them, and honor them.

Number 3:

On Tuesday, the school’s board of directors took a vote that allowed Kamryn—with a special “waiver”– to come back to school. The vote was 3-1 in her favor. 3 to 1? Who is the “1,” and what objection could they possibly have? Gosh, if I could speak with that person… if I could open up that brain… or maybe that isn’t the problem area. It very well could be the heart.

Number 4

May this media storm bring lots and lots of attention to St. Baldrick’s Foundation—and not just attention, but throngs of people willing to shave their heads to help raise money for pediatric cancer research. Wouldn’t it be FANTASTIC if the Caprock Academy administrators atoned for their error by shaving their heads for St. Baldrick’s? We all make mistakes. We are all on a path of learning to become better people. There is nothing like turning mistakes into victories. I say, “Shave!”

“The whole reason we chose head shaving was to be in solidarity with kids who are going through treatment. I can’t believe people could miss the point like this.”

– Tim Kenny, co-founder, St. Baldrick’s Foundation

News Stories

http://www.foxnews.com/us/2014/03/25/girl-barred-from-school-for-shaving-her-head-to-support-friend-with-cancer/

http://www.denverpost.com/news/ci_25418689/girls-shaved-head-draws-national-furor-at-grand

More about Delaney

https://www.facebook.com/donationsfordelaney

http://www.miraclepartyfoundation.org/#

Melinda's St. Baldrick's Shave

Melinda’s St. Baldrick’s Shave

B+ Foundation "It

 B+ Foundation! Hope Tour 1

bepositive.org

 

Letters to and from Jessie Rees’s Daddy

Grace

 

 

 

Be faithful in small things because it is in them that your strength lies.

~Mother Teresa

From Jessie Rees Foundation Facebook Page 1-24-2013

 https://www.facebook.com/JessieReesFoundation

 

“My Jessie Journal:: Hi Sweet-Pea! I miss you so much. It has been really hard for us after your one year Heaven date. I think I have been medicating myself with busyness and not really dealing with some stuff that I need to. Bottom-line is I’m mad at God. I’m not turning my back on him but I am mad. It took me years to understand why He let my dad physically and emotionally abuse me when I was a little boy. But I’ve learned there are certain things in life that I won’t fully understand until I’m with you. So I will add that to my “talk to God bucket”. The main reason I’m mad now is the immense residual pain your fight has left on our family. I don’t like seeing your mommy, sister and little bro cry. I just want to take aware their pain like I wanted to take away your cancer. But I can’t. And as a dad that prides himself on being a great “daddy” not being able to take pain away and protect my kids is so hard. Then I think of the million+ other families that sit with the same residue in their heart. I have been able to help some of these families navigate their grief the last year, which is a good thing but I just reminds me of the broken brutal world we live in. This is not heaven!!! There is a little saying that says, “Life Hurts…God Heals”. I fully understand the “life hurts” part and want to believe God “heals” but after months of praying, pleading, begging, negotiating with Him for your healing and then getting no earthly healing it really was hard. So again, I’m left to “trust” in God. My counselor is challenging me to “fall back in love with God”. That seems so distant but sometimes in life there are situations that call for us to move forward despite our feelings and fears. So I’m going to focus on your little motto and message NEGU to keep my momentum going as I repair my relationship with God and strive to help mommy, Shaya and JT. NEGU on God and NEGU on Life is what I need to focus on.  If you get a chance, please visit in my prayers. I would love to hear, “I’m ok daddy”. I know in my head you are but my heart would love to hear from you.  Miss you tons, love your more and I will see you in a “wink”. I promise!

Jessie’s father’s cry breaks my heart. It breaks my heart. Little kids are not supposed to suffer; they are not supposed to die. The emotional damage of childhood cancer is deep, and it’s something so painful that we have difficulty acknowledging it. If we have never experienced the horror ourselves, we feel much better not getting close to those feelings. Those feelings are unimaginable—if we even go to the place of imagining… oh my gosh… it might happen to us!!!

But the trouble with turning away is that this same nightmare will continue its devastation on children and their entire families. We must ask ourselves how we can stop it and then do everything we can, as fast as we can, to get it done.

We need research for cures for childhood cancer. With proper funding, cures are within our reach.

Dear Mr. Rees,
 
I can hardly see as I write this to you. I will always remember this message of yours. Before this day, I had already dedicated my life to doing all that I can to bring cures for children with cancer. What I want you to know is that your heart has renewed, inspired, and encouraged my fight.
If I may encourage you in your faith, it would be a great blessing. We hear all the time that “God is in control,” but what I would love for you to consider is that He gave all of us free will. If “our will” was to cure childhood cancer, it would have already been done. We are missing what is right in front of us. We have the tools, the resources, and the knowledge. But our will, as a society, is twisted into false perceptions because what we imagine to be truly important is oftentimes nonsense. One example… how much did we spend in the United States last year on cosmetic surgery?  Since I asked this, I had to look it up… $10.4 BILLION…
I am so sorry for your tremendous loss. My prayer is that your pain will transform people’s lives– like it has mine– to help them to make choices based on care, compassion, kindness, and love. I pray you grow closer to our loving, living God. You have made an imprint on my heart forever. I wish there was a way I could thank you.
 
With hope for all of our futures,
 
Melinda

What can YOU do?

Please take a moment to sign this petition:

Light the White House Gold for the month of September to honor pediatric cancer fighters.

https://petitions.whitehouse.gov/petition/light-white-house-gold-month-september-honor-pediatric-cancer-fighters-and-bring-light-cause/syV6M6wX

St. Baldrick’s Shave

http://www.stbaldricks.org/participants/melinda

St  Baldrick's Flyer

 

 

Why I Shave… Max is Forever Seven

Grace

Is it possible for someone you have never met to influence your life in deep, profound way? I am not speaking of a famous writer, thinker, actor, athlete, or speaker. The person who has had one of the deepest influences on my life is a seven year-old boy… a seven year-old boy who will remain seven forever.  

Maxwell Kincaid Nunn was born on February 6, 2003. Max passed on Thanksgiving Day 2010. 

From Max’s obituary:

“Max was diagnosed with a Primitive Neuroectodermal Tumor (PNET) of the Central Nervous System (CNS). 

Max enjoyed was hunting & spending time with his dad. He liked riding his quad. Time spent hanging out with his friends, sitting by bonfires, collecting gadgets opening the mail & riding in his dad’s truck were some of the things that made Max happy. He also liked to go fishing, playing sports, and listening to music.

Max was an awesome individual with a heart melting smile that touched the lives of countless people across the world.”

Max Nunn

What I want people to know about Max is not written in his obituary. While Max was valiantly battling brain cancer– and at seven years old– he began raising money for pediatric cancer research. Yes, adults, please listen up. At seven years old, while existing in a body riddled with cancer, Max Nunn fully grasped the concept that we need to raise money for research in order to stop the beast called childhood cancer. I loved reading the posts each day where Max would open a pile of mail– envelopes with dollar bills in them that Max would send to St. Baldrick’s Foundation. His family shared his battle with photos, videos, and words of truth.  Max’s smile could melt the polar ice caps. Max’s personality could light up the world in the middle of a full-blown power failure. Max’s heart to help children fighting cancer lit a fire in me. I can never think of Max without hearing him say, “Two bucks, I mean it!” Max was serious about raising money for pediatric cancer research; he had no hesitation in asking people to give. It wasn’t for him… it was for the kids.

The Nunn family

There is no such thing as giving too little, only a matter of giving or not giving. Every “Two Bucks” matters. 

It’s no surprise that Max’s mom and sister have both shaved their heads to raise money for St. Baldrick’s Foundation. Max’s dad also works passionately for the cause of raising money for pediatric cancer research. I have tremendous respect for the Nunn family’s decision to share Max’s story with us.   Because they chose to share, I have been able to learn what we need to do to, what I need to do. If I can raise money for research by shaving my head, and honor courageous children by doing it, then bring on the razor. Over the next month, as shave day approaches, I will be sharing stories of childhood cancer warriors. I want to remember, and I want everyone else to know, I am shaving to honor them. I am shaving because I love them. 

 Max Nunn

I have been given the gift of loving this boy named Max… who will forever be seven.  Although Max will forever remain seven, the seeds he planted in me will grow like Sequoia Trees. 

My love for Maxwell Kinkaid Nunn the Great is one HUGE reason I will become bald again. I can hear Max saying it now, “Two bucks, I mean it!” 

Please consider a Two Buck donation in honor and in memory of Max.

http://www.stbaldricks.org/participants/mypage/579474

Penn State Dance Marathon and a Boy Named Kyle

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

Wow, wow, wow!

The Penn State Dance Marathon (THON.org) has raised $10,686,924.83 for pediatric cancer research!

THON.org is the largest student-run philanthropy on this Earth. The Penn State IFC/Panhellenic Dance Marathon raises funds and awareness for the fight against pediatric cancer. In 1973, a group of students held their very first dance marathon; the 39 couples who participated raised $2,000. Now, THON has over 700 dancers, 15,000 student volunteers, and it has raised more than $78 million to benefit The Four Diamonds Fund at Penn State Hershey Children’s Hospital.

http://www.thon.org/whatisthon/cancer_facts

THON is a shining example for all of us who work to stop childhood cancer. I absolutely love to see and hear about young people caring about others. Truly, I wish children would learn more about philanthropy in school when they are very young. I wish they could have many opportunities before them to think of others and to learn altruism. Teaching children to care for others gives them a unique dose of gratitude for their own lives—it teaches them they are a person of worth because they have something to give.

What a concept, right? Because they give, they have a special value. A person’s value does not come from what they “have,” but from what they “give.”

To the THON dancers and volunteers, thank you! You have given more than your time, effort and money. You have inspired us, encouraged us, and lit a path for us to follow.

And now, I need to tell you about a boy named Kyle. Kyle is four years old; he needs a bone marrow transplant, and his family is desperately seeking a donor. They have created this site to help find one…

Could it be you?

http://kyleneedsyou.org/

One little cheek swab will let you know if you are a match.

Let’s spread the word and help save Kyle’s life.

Kyle Needs All of Us

 

 

Dear Philanthropists

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

Dear Philanthropist,

September is Childhood Cancer Awareness Month.

A Gold Ribbon represents childhood cancer.

Rather than quote statistics today, I want to impress upon you the extreme importance of raising awareness for childhood cancer by sharing truth… this truth comes directly from parents who know the nightmare of their own child fighting cancer.

***“But what is needed even more are open eyes, warm hearts, and CURES so that no other child should be damned to die when they are diagnosed with cancer. KIDS GET CANCER TOO! Early detection is essential. Most children are near death before their cancer is diagnosed, because the mind set is that only adults get cancer, so they are never tested. Once diagnosed, there are so few treatments. For some of these children there are NO treatments. This HAS to change. More research dollars need to be going toward the research and development of SAFE treatments for children. And it is those of us who have suffered such unspeakable loss that stand at the front lines. It’s too late for our children but we fight for YOURS. We fight for every child who is currently receiving treatment. We fight for every child who WILL be diagnosed in the future. 46 children are diagnosed with cancer every single day. And every day 7 children leave this life way too early, murdered by a monster that can be stopped. That’s right, it CAN be stopped. But it takes more than prayer. If praying were enough, cancer would be no more. My child would never have suffered. It takes action, it takes all of us joining together and MAKING it happen. It’s time we stopped relying on an invisible being to do all the work for us.  It’s time we all stood up and starting fighting for the lives of our children, our grandchildren, our nieces, our nephews, our cousins… OUR children.”

*** “It is a beast that needs to be stopped, yet no one will because there is no profit in killing this monster. Profit…. while we are burying our children. “

***I have a feeling this posting is going to upset some people. I am fine with that as long as it isn’t any of the compassionate friends and volunteers who actively support (anonymous) and her family. (You know who you are and this is not directed toward you!) I wrote this because I read every one of the thousands of e-mails and comments that come in through (anonymous) website and Facebook page. For every 1,000 offers of support only a handful of people ever actually get around to doing anything at all. We send a list of a dozen easy ways that people can help yet we rarely ever hear another word. This is frustrating especially considering what (anonymous) is up against now that neuroblastoma cells are growing in her body again. (Yes it is hard to write those words and she isn’t even my child.) So as you read the following parable, please remember that (anonymous) needs you. Not next month or next year but NOW. Also, ask yourself…Are you truly here for (anonymous) and willing to help her or are you just saying that because it makes you feel good?) “

*** “ONE OF THE UGLY TRUTHS…Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 50 % of adult cancer research, but virtually nothing for kids. They don’t commit resources to childhood cancer research because the adult cancer drug business is viewed as more profitable and less risky to them.”

***Wondering when we are going to wake up from this nightmare.  It doesn’t seem real to me at all.  We have gone from sobbing all day to now feeling shock and extreme anger to see what our son is going through.  Our son has been lying in bed for ten days now and with each day this rigid beast has been invading more parts of his body.  We can only sit and wonder what is happening inside his PRECIOUS INNOCENT LITTLE BODY!! “

When I visited Children’s Healthcare of Atlanta on the Children’s Hospitals Hope Tour this summer, they were highly optimistic about breakthroughs in research. Funding for research is what we need!

Research lab at Children's Healthcare of Atlanta

“Do not withhold good from those who deserve it, when it is in your power to act.”

~ Proverbs 3:27

“Withholding good” is unacceptable. There has to be a huge line of philanthropists just waiting with their checkbooks open to give to pediatric cancer research. You don’t need to wait until September to fill in the zeros on those checks!

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