A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Curefest’

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

 

 

 

 

 

 

 

 

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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/

 

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