A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for November, 2010

Oprah Please Do A Show On Childhood Cancer

I will leave my current Twitter theme to let you know that the Oprah Please Do A Show On Childhood Cancer Facebook page is growing rapidly. If you visit the page tonight (And Please “Like” if you have not already ūüôā ) http://bit.ly/br6Mrg¬†you will find great excitement about a news story that has “gone viral.” A story that aired in Kansas City with the founder of the page and her inspirations, girlfriend Deliece and her son, Braden (who are both fighting cancer,) is being aired in cities across the country tonight! This is awesome, awesome, awesome!

Okay, I see you shaking your heads and wondering… why Oprah? Why “awareness”?

What if just one parent learns to ask for a second opinion? What if just one teen realizes they need to speak up and tell someone they trust that they don’t feel well? What if one child with cancer sees the show and knows deep inside that there are people who care and there are people who are working to make things better for children with cancer?

What if viewers realize for the very first time that there is a Monster attacking our children?

What if a viewer who has lots and lots of $$$$$$$$$$$ they couldn’t possibly spend sees the show and decides to “fully fund” pediatric cancer research? (oooooooooo I love this one!)

Childhood Cancer

¬†We tell children that there are no such thing as “monsters,” but the truth is there is a monster that attacks from within and destroys in horrific ways.

The monster’s name is Cancer.

I’m out to get it.

Oprah Please… Pretty Please?

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Twitter Manual to Avoid the Twitter Police

I’ve decided I need a Twitter Manual. I thought that the whole point of Twitter was to send tweets; I had no idea that there are “Rules” for Twitter. My problem is, I don’t know where those Twitter Rules are written. There needs to be a Twitter Manual.

I know someone who had her account shut down– no, actually two people who have had their accounts shut down– because they were tweeting and retweeting too much (spreading awareness of childhood cancer.) When they tried to tweet, all they saw on the screen was the big blue Fail Whale. Then, to top it off, they had to undergo the sticky mess of “explaining themselves” to the Twitter Police before they could get their accounts active again. Seems like the First Amendment should cover this whole Twitter dilemma, and we should just let the tweets fly without limit to content or numbers. I don’t get it! Doesn’t Twitter want us to tweet?????????????

I will leave this terribly confusing subject to tell you about a highly disturbing subject (nice change, huh?) Can you believe the story in this article about a teen being bullied for being a cancer survivor??????????????

http://www.unionleader.com/article.aspx?headline=Bedford+teen+bullied+for+her+cancer&articleId=95b97557-7c3d-4ad1-abac-bff7f423b254

When I see this, it makes my blood temperature rise. We need awareness. If those teens knew what Michelle and other cancer patients face, and what they conquer, they wouldn’t be so mean. In fact, I believe if teens really knew exactly what their¬†peers with cancer go through, we would have a nation of¬† childhood cancer advocates in the making.

Yep… that is what I believe.

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

Jaynie, Jaynie, Jaynie!

What a great day yesterday! Mom and I left home and headed south for Los Angeles early in the morning. The weather on the Central Coast of California was spectacularРand that it not coming close to describing the gloriousness of the day! As we traveled through the never-ending vineyards, the sun splashed its morning yawn upon the leafy rows and they glowed a brilliant golden hue. As we came over the top of the Cachuma Pass into Santa Barbara, we could see all of the Channel Islands scattered throughout the shiny, sparkly Pacific Ocean. Yes, it just took our breath away over and over again.

Then, reality set in as we closed in on Los Angeles. I’m not a city fan,¬†and I made this comment to my mom when describing the day in LA yesterday, “God did the best He could with LA!” Having always lived in a small town, I get a bit claustrophobic in cities:) We found our way through the ever-present Los Angeles traffic, over the ever-glorious Sepulveda Pass and got off at Wilshire Blvd.

UCLA Medical Center was quite impressive. After being there for just a short time, my mom and I decided we were quite comfortable there… funny place to feel “comfortable!” Being there makes me think even more about pursuing a career in the medical field.¬†Stanford, did you hear that?!

And now, on to the very most important part of our journey to Los Angeles… Jaynie! You will laugh when¬†I tell you that everyone– including Jaynie– wanted to prepare me for what I was going to see when I walked into Jaynie’s¬†room. I was prepared for tubes, lines running everywhere, and a ghostly white Jaynie countenance.

Hee hee!!!!!!!!!!! What I got when I walked into her room, was Jaynie¬†sitting up in a chair with a huge grin on her face that has more color in it now than it has had in years!¬† Her medical team not only removed the scar tissue that was causing her extreme difficulty, but also, they replaced Jaynie’s¬†valve with a much bigger one. And yes, I did get to walk with Jaynie¬†and her IV pole, making sure the back of her gown was not flapping in the wind– just like she did for me. I always tell people, “That Jaynie, she always has my back!” I can’t tell you how much it meant for me to do the same for her.

Jaynie at UCLA after Heart Surgery

My Buddy Jaynie

I don’t even know where to begin today telling you everything I want to share! I¬†read the results of a study that just came out– scientists have found three new gene variations in the development of¬†Hodgkin lymphoma. When I hear about studies like this one, it gives me great hope for the advancement of knowledge and treatment of all types of cancer in the future.

http://www.foxnews.com/health/2010/11/01/study-finds-gene-links-common-lymphoma-cancer/

And Jaynie!!!!!!!!!!!!

Thank you so much for your prayers for Jaynie. Her surgery went very well, and my mom and I will be traveling to UCLA tomorrow. I told Jaynie¬†that I am going to play “Dancing Queen” on my I-pod and when she hears the music coming down the hall, she’ll know it’s me:) And then… I am going to hold the back of Jaynie’s¬†gown closed and pull her IV alongside us as we “dance” down the halls… just like Jaynie¬†did for me at Cottage Hospital!!!!!!!!!! I loved joking with Jaynie¬†at the time about how she “always had my back!” It’s going to be very strange to have Jaynie¬†be the one in the size XXXXXL diamond-print hospital gown, but at the same time, so very familiar.

Dance Celebration Down the Halls of Cottage

Love you Jaynie! Thank you God for watching over her and thank you to everyone for your prayers for Jaynie’s complete recovery.

Prayers for Jaynie

Tomorrow, my Child Life Specialist who has become a dear friend is having heart surgery. I am asking everyone I know to please pray for her and for her doctors and for her doggies who will be lonely without her.

Photo¬†from Grace: A Child’s Intimate Journey Through Cancer and Recovery:

 

 

Jaynie, Danny and Antonio before my surgery

 

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