A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Delaney Clements’

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

 

 

 

 

Suzanne Shelpman, A Bright Gold Spoke

 

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Suzanne Shelpman is one of Melinda’s Facebook friends. I notice Melinda and Suzanne have 233 “friends” in common. Suzanne is not a high school friend, or a Pepperdine friend; Suzanne is a caring, concerned advocate for children with cancer. Suzanne keeps track of countless CaringBridge sites  and Facebook pages where families post the latest updates on their child’s treatments, scans, and health reports. She follows the journeys of many children, and she writes beautiful posts on her Facebook page so that others can join her in caring, sharing, and praying. She saves all year long so she can donate to support friends who are raising money for childhood cancer research.

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“It snowed last night, so am headed over for a session of Spin cycling for Run for the White House for Childhood Cancer Awareness 2014. After I finish, it is my night to serve dinner to my unsheltered homeless friends.”

“I have several more kids’ updates and will post when I get back later tonight.”

                                                                            ~Suzanne Shelpman

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This is one of Suzanne’s latest updates about Carly, who we have all been praying for. And please remember Bryson!

“Warrior Carly who is battling a secondary cancer caused by the harsh treatment during her initial diagnosis will have a stem cell transplant tomorrow (Tuesday). Please keep her in your thoughts and prayers and remember her generous donor.”

                                                                           ~Suzanne Shelpman

https://www.facebook.com/groups/prayforcarlytomlinson/

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Not everyone can create and run a foundation, like so many childhood cancer families have successfully accomplished. Not everyone can create an Emmy Award-winning childhood cancer documentary, like Mike Gillette. Not everyone can go after the entire United States to light it GOLD, like Tony Stoddard. Not everyone can shave their head in support of their cancer-fighting friend, like Kamryn Renfro did for Delaney Clements. Likewise, not everyone can do what Suzanne so lovingly does each and every day of her life. She uses her life to help better the lives of children who are suffering.

Each one of us has something unique we can give to children fighting cancer. Each gift is like a Gold Spoke in a Wheel. All of these Golden Spokes are equally important and equally necessary to keep the Wheel moving forward. The Wheel must move quickly forward, because we have children’s lives to save.

My deepest thanks to Suzanne. Your sincere love is inspiring, and it encourages all of us to look inside to find our very best selves.

My deep thanks to all of you Gold Spokes out there who keep loving, giving, and sacrificing for the goal of ending childhood cancer.

Praying for Carly Tomlinson

Praying for Carly Tomlinson

Guest Blogger: Lee Marchiano

Delaney Clements, Kamryn Renfro, and a St. Baldrick’s Shave Challenge for Caprock Academy

Kamryn Renfro has taught our entire nation a lesson in friendship. Just 9 years-old, she shaved her head in solidarity for her friend, Delaney Clements, who is battling cancer. Like I wrote yesterday, kids teach us. I imagine what a great friend Delaney must be to Kamryn for her friend to want to do this for her, and I applaud the compassionate selflessness Kamryn showed with her beautiful act of love for her friend. However, Caprock Academy, the school Kamryn attends in Grand Junction, CO, sent her home on Monday, stating she was violating their dress code. She could come back if she wore a wig.

The dress code “was created to promote safety, uniformity, and a non-distracting environment for the school’s students,” Catherine Norton Breman, president and chair of the academy’s board of directors, said in a statement.“

There is so much wrong with this, I do not even know where to begin!

Number 1:

I do not understand a school “dress code” that does not allow “bald heads.” There are people who cannot help being bald—including kids with cancer. Are we actually this unaware that kids get cancer? Is it not enough that children stricken with cancer have to lose their hair? This “policy” is antiquated. Will Caprock Academy send a child who is fighting cancer home until they come back with a wig? Ugggggggh! Please, Caprock Academy, strike that policy down now!

Number 2:

Hello, compassion? This is a crystal-clear example of selflessness. This is a brilliant example of friendship at its best. I would love to see Kamryn honored rather than reprimanded. I would love to see Delaney honored for the beautiful person she must be to have a friend who loves her so. These are the exact values we need to be teaching our youth. Let’s make an example of them, and honor them.

Number 3:

On Tuesday, the school’s board of directors took a vote that allowed Kamryn—with a special “waiver”– to come back to school. The vote was 3-1 in her favor. 3 to 1? Who is the “1,” and what objection could they possibly have? Gosh, if I could speak with that person… if I could open up that brain… or maybe that isn’t the problem area. It very well could be the heart.

Number 4

May this media storm bring lots and lots of attention to St. Baldrick’s Foundation—and not just attention, but throngs of people willing to shave their heads to help raise money for pediatric cancer research. Wouldn’t it be FANTASTIC if the Caprock Academy administrators atoned for their error by shaving their heads for St. Baldrick’s? We all make mistakes. We are all on a path of learning to become better people. There is nothing like turning mistakes into victories. I say, “Shave!”

“The whole reason we chose head shaving was to be in solidarity with kids who are going through treatment. I can’t believe people could miss the point like this.”

– Tim Kenny, co-founder, St. Baldrick’s Foundation

News Stories

http://www.foxnews.com/us/2014/03/25/girl-barred-from-school-for-shaving-her-head-to-support-friend-with-cancer/

http://www.denverpost.com/news/ci_25418689/girls-shaved-head-draws-national-furor-at-grand

More about Delaney

https://www.facebook.com/donationsfordelaney

http://www.miraclepartyfoundation.org/#

Melinda's St. Baldrick's Shave

Melinda’s St. Baldrick’s Shave

B+ Foundation "It

 B+ Foundation! Hope Tour 1

bepositive.org

 

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