A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Smashing Walnuts Foundation’

“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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A Night of Golden Lights at the White House- CurefestDC

Curefest 2014 252After the Curefest DC Welcome Event at Nationals Stadium, the attendees all headed to President’s Park across the street from the front of the White House. I never would have arrived without the help of Karla, who introduced me to my very first ride on the Metro. Since I live in an area where there are rolling hills, oak trees, strawberry fields, and cows grazing, this was an eye-opening city experience for me. I know it’s normal for people who live in DC and other cities to travel on underground railways, but I admit that my usual Podunk surroundings make it so I am utterly amazed by the setting and all the people! Thanks Karla– I would still be standing in the station with my mouth open.

Is it any surprise that A Night of Golden Lights is the brainchild of none-other-than Tony Stoddard? (A Day of Yellow and Gold to Fight Childhood CancerOur time together at this event was exceptional. I wish I knew the name of the singing group who sang “If I die Young” — it was beautiful! I do have this photo of the singers with Ellyn Miller (Smashing Walnuts Foundation) and her son.

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Mike Gillette, Emmy Award-Winning Filmmaker from The Truth 365, helped organize the evening’s events with Tony Stoddard. Thank you, Mike and Tony, for your never-ending passion and energy for the kids.

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One of the most meaningful moments for me of Curefest DC came next. Tony began by telling us about his son, Cole. Cole died from Stage 4 Neuroblastoma. I highly recommend reading this article Tony wrote for Cancer Knowledge Network, telling his story. https://cancerkn.com/promise-son/ Being present to hear Tony tell his story is something I will always carry inside me, and what followed next will stay with me forever. Parents and brothers and sisters took the stage to tell their stories. We need this. Giving these people a microphone and a caring, compassionate audience was beautiful. Each person who shared seemed comfortable that they were talking to a group who truly wanted to listen. We were all “family” on this night. We were all one. We were not separate. We were not alone.

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

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Slowly, almost somberly, the crowd began walking. I walked behind Tony, imagining what must be going through his mind and his heart. It was a time of reflection as our group neared our destination. If someone dropped a pin, we all would have heard it. It was a time of honor. It was a time of respect. It was a time of memory. It was a time of conviction that we need to do all we can to see that the pain and suffering present inside so many would not go without acknowledgement– would not wither without action or purpose.

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As we lit and lifted our golden lights together, we lifted our voices to sing, “Amazing Grace.” We sang the first verse through three times in a row. (Everyone chuckled when they announced we would do this because it is the only verse everyone knows!) A Night of Golden Lights at the White House was an evening I will always remember. I was wishing our president was not vacationing, so he and his family could look out their window and see hope for children with cancer. My next thought was, “It doesn’t matter.” What matters is that all of these people gathered with One Voice for our kids. 

To be among these people is life-changing. Each person I met left a piece of their heart in mine. I hope I was able to leave them a warm piece of my heart as well. 

Night of Golden Lights White House

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

Curefest DC Welcome Event at Nationals Stadium

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

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

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

National Angel Quilt

National Angel Quilt

Capitol Building

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

Nicole Ricken performing at CurefestDC 2014 Welcome Event

Nicole Ricken performing at CurefestDC 2014 Welcome Event

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

Tatto Tom spreading joy and tattoos

Tattoo Tom spreading joy and tattoos

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

~Dr. Irene Koesters

Curefest Welcome Event t-shirt

Curefest Welcome Event  — One Voice for Childhood Cancer

The very best thing about the Welcome Event? 

Voices for childhood cancer combined with action against childhood cancer.

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

Keep it up.

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Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

 

 

 

 

 

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