A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘@1ballerina’

Childhood Cancer Advocacy Momentum — Connect Connect Connect

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My name is Lee, and I am Melinda’s mom. As a college sophomore, Melinda has responsibilities that make time for blogging difficult. Sleep is a rarity. The world of childhood cancer still goes on, which means this blog about childhood cancer needs to continue. Melinda has invited me to be her guest blogger until Pepperdine lets out for the summer.

Since the time of her treatment, six years ago now, we have worked together as a “team” to help children with cancer. Having a strong focus to help others was instrumental in Melinda’s physical and emotional recovery from cancer, and I have no doubt it has helped me as well. There is something indescribable about helping others when your very own self is falling apart. Isn’t it true we feel as humans that we need to have our act together before we can help anyone else; we need to have all of our “ducks in a row” before we have “extra” to output for others. The plain truth is, we are often more compassionate, more understanding, and more helpful when we are broken, mangled, or bent. Any parent whose child has fought childhood cancer falls into this broken, mangled, or bent category. I am no different. My heart will never recover from the terror of Melinda’s suffering. But… I will rejoice every moment of every day for the rest of my life that she has come through the suffering. I intend to take this mangled heart of mine and form its love into a huge, fierce fire– a fire that will light the world of childhood cancer.

The childhood cancer community is a community no one chooses or dreams of joining. We are “drafted.” Not long after I was drafted, I realized I needed to “Enlist.” My love for children is so deep, so great, so overflowing, that I have no choice but to help these children in every way I can. I will admit there are kid parts of me that have never grown up. I have been known– on many occasions– to randomly and suddenly break into a skip. This is just one thing I love about kids; they teach us joy. They teach us about what we have discarded and left behind in our adult lives. When that adult reserve kicks in and tells me not to skip next time, I plan on inviting it to join me!

I want to express my thanks to moms and dads in the childhood cancer community for sharing your daily lives through social media. I feel I know so many of you, just from following. You have given me a better understanding of the problems, pressures, and battles you face each moment of each day. I want you to know how much I care. I want you to know how hard I will work for change. I want you to know you are not alone.

Finally, I am excited about the momentum that is building. I am honored to know many of you who work your tails off so that there can be newly funded research for less toxic treatments. I am amazed by the courage of so many of you who have lost your children to cancer that now run foundations to help the kids. After five years of my personal advocacy, it’s clear to me that the tides are beginning to turn. Four years ago, a dear lady named Christine began a campaign intended to raise awareness of childhood cancer. She was inspired by her friend, Deliece Hofen and her son, Braden, who is currently undergoing a bone marrow transplant. The campaign aimed at getting Oprah’s attention for a segment on her show and was called, “Oprah, Please Do A Show On Childhood Cancer.” Within no time, the childhood cancer community came together with a loud voice. Unfortunately, Oprah did not answer our pleas to help raise awareness. She had never done a show about childhood cancer and never did one before the show went off the air.

Recently, the outcome of our cohesiveness did bring about something extraordinary. “Under intense pressure” from social media and grassroots, Josh Hardy was able to get the medicine he needed, but had been denied. Another beacon of hope for progress is the Gabriella Miller Kids First Research Act. Because we are connected and engaged with each other in our community, we are beginning to achieve some success. This means we have opportunities to save kid’s lives! This means we can build even more momentum for avenues of change.

Josh Hardy

http://video.foxnews.com/v/3329179339001/7-year-old-cancer-patient-receives-new-drug/#sp=show-clips

The Gabriella Miller Kids First Research Act

http://www.foxnews.com/politics/2014/03/11/congress-passes-bill-to-support-childhood-cancer-research/

Yes, let’s connect, connect, connect so we can achieve as much as we possibly can. Childhood cancer is the #1 cause of death by disease in our country. Seven children die from cancer every day here in the United States and over 40,000 children are currently in treatment. Many of these children fight for years. Many of these children suffer even more from the effects of their treatment than they do from cancer.

To all my fellow onc-parents, I love you and your children.

“Charge!!!!”

Please leave your contact on this page so we can all connect.

Facebook: https://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076?ref=hl

Twitter: https://twitter.com/1ballerina

            https://twitter.com/HappyQuailPress

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Even if our Wallets are Empty

Grace: A Child's Intimate Journey Through Cancer and Recovery

I haven’t written much about Twitter since the Twitter Police nearly nabbed me almost a year ago. I was busily tweeting childhood cancer “please help us” tweets when @1ballerina (me!) received a TweetWarning from someone who believed I was Spamming; he threatened to “report me.”

Since then, I have been behaving myself on Twitter, even though I never did find a Twitter Manual to describe to me in detail what is okay and what is not okay. I have met some incredible people through Twitter, and I just never know who or what will be the next surprise. (Happily, I don’t receive Twitter Police threats anymore!)

One wonderful surprise this week, was meeting @AFreeBirdOrg  They describe on their website what they do to help children with cancer—

“Our mission is to empower each bird to fly free.”

A Free Bird aims to provide the opportunity for children diagnosed with cancer to continue to explore their artistic passion, and to give them the strength and power to fight their disease.”

I am grateful for people/organizations that recognize this kind of need and then act upon it! I hope that by sharing my story on http://www.AFreeBird.info that people will understand how crucial it is for children fighting cancer to be able to continue their artistic passions because it truly helps bring healing.

http://afreebirdorganization.tumblr.com/post/8888955643/melindamarchiano

Speaking of Twitter and ways you can help fight childhood cancer by giving just a speck of your time, please tweet this to help raise money for Isaiah Alonso Foundation:

 @The_IAF and @SocialVest for #kickasscause NOW! We can win $ for #childhoodcancer. Please RT!

(Just copy the whole thing, paste it in your What’s Happening Window, and tweet!)

One more Click-of-A-Button way for you to be an advocate for childhood cancer this very day is to vote here for Journey for a Cure:

 http://www.vivint.com/givesbackproject/charity/1262?state=1842d89f75e0db34bd61e511d9b7efd0&code=AQAa8EkA-d9fBg-oXgy86KiGgOcmSU0-ODhjEdU-tjhoHikbMHzT8KoEVqdGMVLzUb9hBw8px2hT_Gr_M5EOW0sITXrEwoxzbvt9kl86yuswNDt501xXuI987DLaF69l2gux5lIrWCCyVLWDL9Z18MhKJNIr2dCgppd_FfGkbqvXEQrm4O34bcGoBScIMEKhG0S_8zZxG59dO2MDTvfDvady

Finally, I want to thank Mr. Tom Nunn for his great idea of asking everyone to pass on a childhood cancer story…

There are so many ways we can be childhood cancer advocates, even if our wallets are empty.

I loved this special doorway for kids at Dell Children's Hospital!

I Got in Trouble on Twitter

I have had a Twitter account for over a year, but I have just begun regular tweeting in the last couple of months so that I can help spread the word about childhood cancer and also to receive regular updates from various cancer information sources. One of the strategies that the founder of the Oprah Please Do A Show on Childhood Cancer uses to grow the page is tweeting. She tweets to different celebrities– people who have huge Twitter followings– and asks them to retweet about “Liking” the page. Her Twitter name is @PiedPiperinKC, and when she gets someone to retweet, all of the rest of us “Followers” retweet the tweet. Got all that????

Okay, so here comes little @1ballerina (me!) trying to help the cause. I retweet everything that comes along, but I start to think, “Hey, I could actually tweet some of my own if I just copy @PiedPiperinKC’s tweets and start sending them off to other people she hasn’t sent to. I’m feeling really good about sending off tweets to help raise awareness for childhood cancer– working to save lives– when poor little @1ballerina gets a swift CYBERSWAT! I received a return tweet from an obviously disturbed recipient. Warren Whitlock, who has an enormous Twitter following, told me not to send him “Spam” and then told me he would have to “report me.” I followed with a “Is this Spam?” tweet and he politely replied with the definition. I had no idea that I could get in trouble and have people “Report me” on Twitter! How many tweets can I send before I cross over the line to SPAM? If I change up the wording just a bit in each one, does that disqualify my word-shuffled tweets from being classified as SPAM?

What the heck happens to poor little @1ballerina if I do get “reported”??????????????

Who ARE  the Twitter Police?

I hope they don’t catch me… I am going to have to type my childhood cancer awareness tweets in the dark of night… and hope they don’t GET me.

May I remind all of you one more time why I am willing to risk the Twitter Police?

http://www.kmbc.com/r-video/25662362/detail.html

Sometimes we have to ruffle a few feathers on our way to saving children’s lives. I am very sorry Mr. Whitlock for ruffling yours… @1ballerina really didn’t mean to.

Grace: A Child's Intimate Journey Through Cancer and Recovery

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