A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Melinda Marchiano’

“Children are the Fruit of all Humanity”

Curefest 2014 483“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!

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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

 

 

 

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

 

 

 

 

If Childhood Cancer was in Human Form…

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/

 

What Childhood Cancer has in Common with Landing on the Moon

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

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

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.

——————————————————————————————————————————————————————————————————————

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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