A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Austin Munoz Moorpark Football Senior Night

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.

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

~Devon Still

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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

Leah Still

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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

 

 

Nurse Cyndi, the Blue Chemo Fairy

Nurse Cyndi, the Blue Chemo Fairy

The truths in my last post about what childhood cancer has in common with landing on the moon continue to circulate through my mind and heart. What speaks loudest to me is that we are ignoring the urgency of the need for cures for childhood cancer. There is so little awareness of childhood cancer that we accept “what is.” Many people assume that any child with cancer can go to St. Jude’s Children’s Hospital and receive free treatment that will cure them for life.

Ugh.

There is no known cause for childhood cancer.

Getting a proper diagnosis for a child with cancer can be an all-out mission of searching.

When a child is diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults.

Treatment for childhood cancers (if there is one) are ancient.

“Research for children with cancer-especially for those with solid tumors like sarcomas and brain cancer—lags nearly two decades behind their adult counterparts.”

~Eugenie Kleinerman, M.D., Division Head, Division of Pediatrics, TheUniversity of Texas MD Anderson Children’s Cancer Hospital

NCI funding for childhood cancer research has been dwindling, with a 30% decrease over the past decade. Pediatric cancer research receives a tiny 4% of the total NCI budget. This is critical. Federal funding for pediatric cancer research is vital, due to the fact that pharmaceutical companies do not see returns on their investments like they do for developing drugs to treat adult cancers. Virtually all the funding for pediatric cancer research comes from the NCI. Cuts to this budget greatly harm the Children’s Oncology Group and block medical discoveries that will lead to saving the lives of our children.

“Accounting for inflation, NCI’s funding has decreased by more than $1.1 billion (24.7 percent) since FY 2003.”

(The American Recovery and Reinvestment Act of 2009)

Where I really want to go here is beyond the statistics. We are talking about children. We are talking about children who are fighting for their lives. We are talking about seven children dying from cancer each and every day in our country. We are talking about lack of research which means outdated treatments that cause a lifetime of suffering—if a child does indeed survive.

Imagine…

Imagine that childhood cancer was in human form, not disease form.

Would we carry on with our lives as if we had not a care in the world while an assassin showed up and killed 7 children each day in this country? Would we call in the FBI, the Navy Seals, and every single solitary team that could possibly snuff out this killer? Would we develop ways to protect our children from this evil monster? Would we wait a day, a week, a month, a year, to act? 

If childhood cancer was in human form, we would have already captured and killed it.

Just because childhood cancer is in disease form does not mean this is not urgent!

As I prepare to travel to Washington, D.C. next week for childhood cancer events, including Curefest, I keep thinking of Erin Griffin and Gabriella Miller. Both girls spoke at last year’s event. This year, they will not be able to attend in person. They will be viewing the event from heaven.

This IS urgent! THIS IS URGENT!

Sometimes I wish childhood cancer was in human form. I wish it could meet Mohammed Ali in his prime in the ring.

Pin The Bag of Chemo on the Mass

Pin The Bag of Chemo on the Mass

Guest Blogger: Lee Marchiano

Something you can do today to help end childhood cancer:

https://www.curebraincancer.org.au/page/98/petition

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

 

IMG_2650We are nine days into September, Childhood Cancer Awareness Month. While I feel thrilled and encouraged by more Gold Lighting victories for childhood cancer awareness, there are times when I realize just how far we have to go before we even come close to becoming societies educated about the number one disease killing our children. One of these times struck me right between the eyes.

I learned, just a day ago, that Neil Armstrong’s daughter, Karen, died of a brain tumor in 1962. Wow.

Given the excitement of this kind of job, why did Armstrong choose to join the space program? Hansen says he isn’t sure, even after all his research, but he pointed to the fact that Neil’s daughter, Karen, died of cancer at the age of two in early 1962. “I think it had a very fundamental effect on Neil’s marriage, on his family, on Neil’s own career,” Hansen said.

“It was only four or five months after his daughter’s death that Armstrong put his name in for astronaut selection. Hansen believes that Armstrong “saw Apollo as a way of refocusing his energies and doing something important, and it was a way for him to really deal with his daughter’s death.”

                                                                ~James R. Hansen, Biographer

Further, I learned that a child who is diagnosed with DIPG—the same type of cancer Karen died from—is treated today with the exact same treatment.

A child diagnosed with DIPG today is treated with the exact same treatment as a child who was diagnosed in 1962!

With the tremendous advances in every area of human life since 1962, it is appalling that this is true.

When Melinda and I were in Washington, D.C. this past June for Childhood Cancer Action Days, we planned extra time to visit museums. Something about seeing the exhibits where people gathered together to stand up for their human rights made me look at the current state of childhood cancer advocacy in a more focused light.

Solving the problems surrounding childhood cancer is not going to happen without a joining together of forces, without establishing specific goals, or without sacrifices. Just like Neil Armstrong refocused, today there are numerous bereaved parents who are “refocusing” their “energies and doing something important.” These parents are heroes. I would love to begin naming a list of them, but I know that is not what they want. They don’t want their names honored; they want their children honored. They want awareness that leads to funding for research that will bring less toxic treatments and cures for childhood cancer.

I won’t name them. History will name them. History will remember them. Your children and your grandchildren, and their grandchildren will have a better life here on Earth because of the sacrifices these heroes are choosing to make today. Someday in the future, I will stand in that same museum and read about these people and the great advances they achieved toward cures for childhood cancer.

The most recent communication I received from PAC2 states exactly where we need to begin to be certain that a child will not be diagnosed with cancer 52 years from now and receive the same treatment as today! After typing “52 years”, I cannot breathe…

Go to the moon challengeFrom: PAC2 https://www.facebook.com/PeopleAgainstChildhoodCancer/photos/a.372700847313.154528.370104237313/10152297179327314/?type=1&theater

#ChildhoodCancerChallenge

#GoToTheMoonChallenge

What childhood cancer has in common with landing on the moon is history. The history of Neil Armstrong’s loss of his precious daughter, Karen, must awaken us. We have been “asleep,” for 52 years while our children have been crying out to us for help. Like Neil Armstrong, we have the opportunity to make history. In order to make history, we must create and carry out specific goals, just like they did in the 1960’s in their quest to land on the moon.

“Actually, with cancer, the end of each day is a goal, and waking up in the morning is a victory.”

 ~Melinda Marchiano, Grace: A Child’s Intimate Journey Through Cancer and Recovery

It’s time to combine all forces on deck. There is not a moment to waste.

History is being made each moment. Take the #ChildhoodCancerChallenge

Commit. Sacrifice. Focus. Act. Adequate funding for childhood cancer research must begin today for quicker cures.

This will be better than any moon landing could ever be! The end of childhood cancer…

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Guest Blogger: Lee Marchiano

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 

untitled (3)

Guest Blogger: Lee Marchiano

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

~ Pablo Casals ~

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

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

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

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Lesson 1

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

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

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

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

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

~Tony Stoddard

Lesson 2

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

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

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

@joelwaldmanFOX5

One of Joel’s tweets:

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

 Melinda Marchiano @1ballerina · Aug 22

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

Lesson 3

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

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

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

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

One of his tweets tells about it:

Vincent J. Gentile @VGentile43 · Aug 26

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

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

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

@MarkTreyger718

 Melinda Marchiano @1ballerina · Aug 17

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

Melinda Marchiano @1ballerina · Aug 20

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

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

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

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

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

808

 

 

 

Guest Blogger: Lee Marchiano

 

 

Empire State Building ResponseDear Empire State Building,

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

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

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

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

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

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

Class dismissed.

Would you now please reconsider your decision?

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

Here’s the thing.

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

“Wait til You See My Smile”

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

“Stand strong and you will grow.”

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

With hope for a world without childhood cancer,

Lee Marchiano

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