A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Gabriella Miller’

“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

 

 

 

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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/

 

“Talk is (Bleep); We Need Action” — The Truth 365

“Stop Talking and Start DOING!”
                                              ~Gabriella Miller
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Gabriella tells us to “Stop Talking and Start DOING!”

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

untitled

Are you laughing and crying at the same time after watching and hearing ten year-old Gabriella express her opinions about our elected officials? One of the greatest things about being around kids is they tell you exactly how they feel. Is there anyone else who feels they need to hug her and give her high fives?

The signing of the Gabriella Miller Kids First Research Act by President Obama is the result of a long, arduous, and fervent campaign spearheaded by two of the most passionate people Melinda and I have ever had the blessing of meeting, Mike Gillette and Dena Scarpelli-Sherwood. This progress for childhood cancer research can be traced back to their hearts to help children with cancer and to their willingness to dive into the unknown and “stop talking and start doing.” They produced The Truth 365 Childhood Cancer Documentary to raise awareness, raise funds for research, and to gather petition signatures, all with the goal of uniting the childhood cancer community to work together to end childhood cancer.

http://m.whitehouse.gov/photos-and-video/video/2014/04/03/president-obama-signs-gabriella-miller-kids-first-research-act

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“Talk is (Bleep,) we need action.”
~Gabriella Miller
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“WOW…A 10 YEAR OLD WITH MORE BRAINS THAN ANYONE IN WASHINGTON!”

 The Truth 365 Childhood Cancer Documentary
The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to children fighting cancer. The film features compelling and inspiring stories of children and their families fighting cancer as well as interviews with political leaders and several of the country’s most respected pediatric oncologists. With the help of thousands of volunteers and highly focused social media campaign, the film will inspire millions of people to show their support for children with cancer. Host: Melinda Marchiano
To learn more about The Truth 365, visit www.thetruth365.org or Facebook at www.facebook.com/thetruth365film .
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“By combining the powerful medium of documentary with the viral nature of Social Media, we aim to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, the nation’s top pediatric oncologists and several influential celebrities. In this election-year we need for our politicians to hear the cries of these children and their parents, who are desperate for funding, less toxic treatments, and ultimately a cure.”
~Dena Scarpelli-Sherwood
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http://www.thetruth365.org/one-voice/
http://www.thetruth365.org/petition/
My hope is that Gabriella, Mike, and Dena will educate you, enlighten you, and inspire you to do more than talk about making a difference in the world of childhood cancer. Let’s play Follow-The-Leaders, or become leaders ourselves. There is no time to waste. We must begin Smashing Walnuts today.
Thank you Gabriella, Mike, and Dena. Thank you!
http://www.smashingwalnuts.org/

The Truth 365 Childhood Cancer Documentary

The Truth 365 Childhood Cancer Documentary

Gabriella Miller Kids First Research Act Signed by President Obama

“If I go, if I lose my battle then I’m going to want other people to carry on this war.”

                                                                                   ~Gabriella Miller

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Today, something extraordinary happened in the world of childhood cancer. President Obama signed the Gabriella Miller Kids First Research Act into law, with Gabriella’s family present. Gabriella was diagnosed with a brain tumor at nine years old, and became a fierce advocate for childhood cancer research before cancer stole her at ten years old. As you can see from her quote above, she now needs all of us to carry on the “war.”

http://abcnews.go.com/Health/wireStory/obama-signs-cancer-research-bill-memory-girl-23182252

http://www.wjla.com/articles/2014/04/gabriella-miller-kids-first-research-act-to-be-signed-into-law-101786.html


“This Act may be cited as the Gabriella Miller Kids First Research Act.

Termination of taxpayer financing of political party conventions; use of funds for pediatric research initiative”

The full text:

https://www.govtrack.us/congress/bills/113/hr2019/text

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“When you get cancer, you have to be all grown up and you don’t really get a childhood.”

                                                                                                                ~Gabriella Miller

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While I am feeling happy along with other childhood cancer advocates over what happened in Washington today, I cannot help but think of the Miller family. What did it feel like for them to be there for the signing today? How are they ever dealing with the grief over their loss of Gabriella? One of the things that strikes me most when I watch Gabriella’s videos is when she says, “If I die, I will be with my friends.” What an enormous burden these childhood cancer patients carry, not only fighting for their own lives, but emotionally fighting for their cancer-stricken friends as well.

If you have never “met” Gabriella, you absolutely must. Gabriella shows wisdom that comes only through suffering. The purity of her soul and her message will grab your insides and squeeze them until only love remains. Sweet Gabriella, may your mission continue. Your spirit lives. Your spirit will save the lives of many children in the future. To Gabriella’s family, thank you for raising a child with such tremendous insight, grace, and love. She has forever made an impact on my life. May she forever have an impact on our nation and our on our world.

http://www.thetruth365.org/2013/04/04/welcome-10-year-old-gabriella-miller-to-the-truth-365-documentary/

Gabriella Miller’s words: Sugar, Protein, and the need for Constant Awareness

https://www.youtube.com/watch?v=4a7NZxNMpcA

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“My biggest fear is that a little child is going to die.”

                                                                    ~Gabriella Miller

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

 

Guest Blogger: Lee Marchiano

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