A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Melinda Marchiano’

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.

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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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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 spectacular– and 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

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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.

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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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KSBY 6 TV Helping “Clicks” to Save Kids Lives

My deepest respect and my sincere gratitude go out to Carina Corral and to my hometown KSBY 6 TV in San Luis Obispo, California for being the very first reporters to air a story focused on the ever-growing “Oprah, Please Do A Show On Childhood Cancer” Facebook page. I have always appreciated the physical beauty of this area I have lived in my whole life, but I have to tell you that this is the first time that I am struck by how blessed I am to live in an area where people truly care for one another.

Carina, you reported exactly what I would have chosen for the most important points!

#1 Childhood cancer is the #1 disease killer of our children.

#2 80% of childhood cancers are found after the disease has progressed to advanced stages!

I truly enjoyed my interview with you, and I cannot even express how much it means to me that you listened with an open mind and heart to this huge problem. Thank you for making childhood cancer important. KSBY TV, I pray you have started a tidal wave of stories across our nation, and I thank you, thank you, thank you!!!!!!!!!!!

http://www.ksby.com/news/local-teen-cancer-survivor-joins-facebook-plea-to-oprah/

Video link:

http://www.ksby.com/player/?video_id=6751&ca 

If people knew what childhood cancer really is, if parents knew early warning signs, if we had screenings, if we had adequate funding for research, if we shared ALL of our information…

If…

We can do it together. No “ifs.”

We better start immediately and kick our steps into Warp Speed. Children are suffering and children are dying. Yes. Now!

Larry!

 

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The Garron Family’s $30 Million Donation for Pediatric Cancer Research

Where have you been??????

He he, just a little humor for this Tuesday afternoon. Where the heck have I been?

One thing I surely do not want to forget to tell you is some incredible news I heard today about a HUGE donation for childhood cancer research.

http://www.theglobeandmail.com/news/national/family-donates-30-million-to-help-sick-kids-treat-cancer/article1772502/

Yes, $30 million dollars has been donated by the Garron family to Toronto’s Hospital for Sick Children. The Garrons lost their son, Michael Garron, after he battled cancer for ten years– from the time he was just three years old. It has been thirty years since his death, but his family has not forgotten him. Their donation in his loving memory is believed to be the largest private gift ever for pediatric cancer research.

Knowing that there are outrageously generous and kind people who are committing themselves to taking vital roles in supporting childhood cancer research is VERY inspiring! I wish I could put my arms around the entire Garron family and squeeze them:)

I know what their gift means to so many families. I imagine that watching your child suffer is worse for a parent than suffering themself. I am so sorry for the Garron family’s loss of their son so early in life. I am so sorry Michael had to suffer so much and for so long. I am touched to the very deepest part of my heart that the Garrons expressed their love for their son, Michael, in a way that will bless other sick children until the end of time.

If there was any way possible to express my thanks, it would have to be something like this:

Write Michael’s name across the sky and blow him a kiss up toward heaven.

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Barnes & Noble and Grace: A Child’s Intimate Journey Through Cancer and Recovery

I am very excited about my first bookstore book signing tomorrow at Barnes & Noble on State Street in Santa Barbara.

http://store-locator.barnesandnoble.com/event/3065003

One of the things I am most looking forward to is seeing my “Santa Barbara friends”!!!!!!!!!!!!!!!!!! My mom talked with Jaynie, my Child Life Specialist, this past week, and she is going to come– and I think she might even bring Rowan!

Who is Rowan?

Rowan is a 122 pound Leonberger and incredibly amazing therapy dog:) I can’t begin to tell you how much healing that Rowan brought to me as the chemo dripped into me.

I love Rowan!

It will be so much fun to see everyone. I hear that dearly loved Dr. Dan will be coming by with his family and guess who else said he will come by?

My mentor, who, without his splendid information, I would not be signing anything tomorrow– or seeing any of the people I love.

Thanks Matt.

Also, without my amazing, loved bunches and bunches, medical staff, there would not only be no book, there would be no Melinda:)

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Amazon UK and Grace: A Child’s Intimate Journey Through Cancer and Recovery

I was telling my mom on the way to dance today about how I find it so “funny” that people I don’t even know are buying my book. I realize that that is what is supposed to happen, but it’s still a mind-boggling concept. I received a beautiful message today on my Facebook page from a lovely woman who is fighting her battle with cancer right now. She told me that her brother bought my book for her. It was evident from her note that she is a wonderful writer. It’s hard for me to put into words how I feel about what she told me. All I can say is that her words made me grateful for every single drop of blood, sweat, tears, and chemo that it took to create my book. I am humbled by how God can use utterly horrid events and turn them into something that can help others.

Only God.

I would like to share the very first review for Grace on Amazon.UK:

A truly engaging and uplifting book eloquently and powerfully written with complete honesty and humour by a most courageous young lady. A book of words which do not hide the struggles cancer brought into her life but also words of hope, joy and absolute love. A book whose words left an imprint on my heart, whose words made me both laugh out loud and cry but above all reminded me what it is like to live life with my heart. It is more than a book, it is a gift of lessons to us all.

Made my mom cry happy tears:):):)

One more thing I just have to share… I keep telling you what a caring and kind person Jeff Foxworthy is. Here is proof:)

 Thanks Ellen!

http://su.pr/1x117l

Giggle! So funny Ellen, and way to go on the whole patience thing Jeff!!!!!!!!!!!!

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BookPageXTRA Ad for Grace: A Child’s Intimate Journey Through Cancer and Recovery

Happy Monday!!!!!!!!!!!!!

I want to share with you this BookPageXTRA ad for Grace: A Child’s Intimate Journey Through Cancer and Recovery.

BookPageXTRA Ad:

http://bit.ly/b3rcbm

I am looking forward to sharing at an expressive writing class tomorrow afternoon for cancer survivors called Lifeline. Susan, the lovely woman who teaches this class, extended this invitation a couple of months ago. It seemed like it was so far off when she invited me, but lo and behold, time flies once again! This will be great fun to not only be with survivors (I call these folks “My People”,) but also to be able to share the process of writing and creating Grace.

I had asked Bryan at Greenleaf a few months ago if I could keep the first page proofs. For some reason, they had to keep them for awhile, but last week, I received them. I will love adding these to my collection of Grace: A Child’s Intimate Journey Through Cancer and Recovery  building blocks. I plan to bring my spiral notebooks with all of the scribbles that my mom deciphered and typed into book form. I plan on bringing the very first proof copy of my first edition of  Grace.  And then, I have to bring an ARC…. oh, and also I should bring the eight different cover designs Greenleaf designed for me to choose from.

I think I better get out a big box and start piling these things in it!

Grace has Arrived!

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