Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for November, 2010

Waiting to hear from Make-A-Wish

I haven’t heard a word from Make-A-Wish… not even one word. I have decided I won’t analyze things, or stress about what this means or doesn’t mean. What is meant to happen will happen. Okay, I will admit that I am a teeeeeeeeeensy weeeeeeeensy bit encouraged because I did not receive an immediate, “NO!!!!!!!!!!!!!!” As each day goes by, I also admit that I imagine myself as a fly on the wall at HARPO Studios as Oprah’s producers scratch their heads and nod at one another in agreement that a show on childhood cancer would be AMAZING!

Okay… imagination is rolling…

After a information-filled Oprah Show that includes CureSearch, Children’s Oncology Group, St. Baldrick’s, and so much more, then Oprah can announce a great big surprise! Oh my gosh, I can see it now– I can really see it!

Oprah announces that her Angel Network is going to build the BIGGEST, BADDEST (yes, BADDEST!) most utterly powerful Childhood Cancer War Machine ever imagined by humankind! She tells her audience how her heart has been moved to make a huge difference in the lives of children with cancer in our country and throughout the world. Oprah goes on to tell all of us how material things are “of this world,” but helping find a cure for childhood cancer is permanent, lasting, and the most worthwhile of all of her missions here on Earth.

It is, in fact, the mission of a true angel. I am still wishing, still hoping, still praying… for Oprah to be the Angel I am seeking.

Oprah Please Do A Show On Childhood Cancer - Our Kids Need Your Help

Sir Maxwell Kinkaid Nunn The Great

Having my brothers home from college over these past few days has been so much fun! We had a great time at Gramma and Poppy’s on Thanksgiving Day, and we packed in a lot of other fun things, like beach trips and laugh fests.

As fun-filled as this holiday has been, there has been something that has weighed heavily on my heart. The little boy I have written about before, Max Nunn, traveled to heaven on Thanksgiving Day. I know this will sound very funny to most people, but I am not sad at all for Max. I am actually relieved for him that he is no longer suffering. At the same time, I am heartbroken for his family who has to find a way to live their lives without him. I have no doubt that the Nunn family will use their love for Max to continue his mission of raising money for childhood cancer research. The way Max’s family came together to support him through his illness was remarkable, and I have no doubt that their loving family mission will lead to an enormous leap forward in the fight against childhood cancer.

Sweet Max, forever 7, my life is better because you touched it with your love. I never met you face to face, but our hearts have met over and over. We share so much more than our battle with childhood cancer. We share our passion– we share our mission– to stop childhood cancer. Max, your precious hands are at God’s side now…  I ask God to please help guide my hands and my heart here on Earth to see that our mission lives on.

Off in the future, people will look back on history and smile when they read about the little boy who fought cancer with everything he had, not only for himself, but for all other children who would have to follow. And the history books will call this boy who inspired millions in donations that led to research for a cure:

Sir Maxwell Kinkaid Nunn The Great

Christina McGrath

Gobble Gobble!

Thanksgiving is my absolute favorite holiday! It makes me feel happy, warm, thankful, and full of wonderful goodness. As you already know, I don’t have to search far for a gagillion reasons to be thankful. My gratitude list begins at the very basics– breathing, walking– you get idea. I know, for sure, that this will never leave me. Having come so close to losing my life, I will forever be aware that we forget to be thankful. We just plain forget.

One of the things I am most grateful for this Thanksgiving is also what I am most excited about. Nicholas and Dean will be home from college. I can’t wait to laugh with them, play Mario, sing “Under the Sea,” pick apples at the apple farm (gonna have to drag them here, but I know they’ll have fun,) walk out on the Avila Pier, go to the Avila Barn and play in the hay maze, take Larry on long walks, and explore the great outdoors in as many places as we possibly can!

On Thanksgiving Day, my family and I are going to my Gramma and Poppy’s house. They prepare the most delicious Thanksgiving Feasts, and even better than their Thanksgiving Feasts are their warm, kind, and loving hearts. It always feels like I am wrapped in a great big blanket of love when I am at Gramma and Poppy’s. Gram will be making her traditional Steamed Date Pudding with hard sauce. She needs to make threee times the sauce, and I have been trained since I was a wee one on how to dip the spoon in the sauce and turn it around just right so that all the sauce ends up on the pudding and not on Grams’ fancy tablecloth:) The bowl with the sauce gets passed around and the entire family will comment on the skills of each “Twirlee.”

Speaking of food, I love cooking and baking. Today, I created my infamous “Buns.” Nicholas gave me a breadmaker a couple of years ago (when I was in my mad, mad world of gourmet food preparation frenzy,) and I make these amazing Buns. While the Buns were rising, I whipped up three pie crusts with intricate leaves I made out of the dough all around the ridge of the pie plate. Mom finished up, putting two pumpkin pies in the oven. Tomorrow will be apple pie day:)

Are you licking your lips and dreaming of stuffing and turkey and pies??????????

Now that I have you in the Holiday Spirit, I will close with this video my mom took when I performed as a soldier at a community event promoting  the Civic Ballet of San Luis Obispo’s Nutcracker.

Nutcracker Soldiers Perform at Apple Farm:

http://www.youtube.com/watch?v=y5nqvIchtlk

Happy Thanksgiving everyone!

Thank you God for each and every one of my tremendous blessings. Help me to always be thankful and to always give from my heart.

Grace: A Child’s Intimate Journey Through Cancer and Recovery (Coping With Illness) by Melinda Marchiano Book Club Discussion Guide from BookMovement –Book Clubs, Book Reviews, Discussion Questions, Book Lists

Grace: A Child’s Intimate Journey Through Cancer and Recovery (Coping With Illness) by Melinda Marchiano Book Club Discussion Guide from BookMovement –Book Clubs, Book Reviews, Discussion Questions, Book Lists.

I Met Jenna Bush Today!

The exclamation point at the end of my post title tells you how excited I am about meeting Jenna Bush today:) Each time I recall this morning, I smile and my heart feels happy.

My mom noticed an ad in The Tribune earlier this week. It said that Jenna Bush Hager was scheduled for a discussion at the Performing Arts Center at Cal Poly in San Luis Obispo (exactly where I will be performing in The Nutcracker in a few weeks:)) on November 8th. I remember her questioning the date, and then she concluded that the paper must have made a mistake on the date and that it had to be today.

We dragged our weary little bottoms out of bed in the deep darkness of morning and prepared to travel north to San Luis Obispo. I brought along a copy of Grace: A Child’s Intimate Journey Through Cancer And Recovery to give to Jenna (yeah, right… like I would really get the chance to do that!!!) Mom and I joked on the way there about how this whole adventure reminded us of setting out for Solvang to look for Lance Armstrong so he could sign my port jar– like a needle in a haystack, we found him. Not only did we find him, but we somehow managed to accomplish our mission, despite the massive crowds.

As we walked to the entrance of the Performing Arts Center, there, over to the far side of the entrance, was none other than Jenna Bush. She was with a photographer who was taking her photos, one other man, and that was all.  Mom quickly assessed the situation and figured that the man with them was most likely Jenna’s “Security Person.” After walking over to this “Security Person,” we found his name to be Cornell, and he was very friendly. Mom explained that I had a gift to give to Jenna and what it was. Cornell responded with an open heart, kindness, and care, asking us to wait with him until Jenna was finished with her photos.

And then, I met Jenna Bush Hager.

I have to tell you that my excitement is not because I met “Jenna Bush,” but because of the person I learned that she is from my experience talking with her. Her smile is brilliant and when she looks at you, she looks straight into your eyes and soul with genuine care. I am still deeply moved by the way she stopped everything– even though she was scheduled to speak within minutes– to ask me thoughtful questions about my book. She is a lovely, beautiful woman, and I feel blessed to have had our lovely talk.

Just in case you don’t know, Jenna is a contributing correspondent for the Today Show, and she’s chair of UNICEF’s Next Generation whose purpose is reducing preventable childhood deaths worldwide. Jenna’s book is “Ana’s Story,” and I am really looking forward to reading it.

To Jenna’s parents, former President Bush and Mrs. Laura Bush, what a beautiful daughter you have raised! You must have given her lots of love, because she sure does have a lot to share.

I am extremely grateful she chose to share it with me today.

Dear Oprah…

Dear Oprah,

I thought long and hard about what I want to do for my Make-A-Wish—where I want to go, who I want to meet. It seemed to be the toughest decision in the world. Each desire that popped into my head left me feeling even more indecisive, and I was left searching for what I truly wanted.

Then, it came to me; it was so obvious. I want awareness. I want better care. I want understanding. I want hope. I want a voice for all of the kids and families who are too beaten down by cancer that no one can hear their cries. People know very little about childhood cancer and greater awareness will lead to earlier detection and SAVE LIVES.

I wish with all of my heart and every fiber of my being that someone, at last, educates people about childhood cancer. My wish is, in fact, not just a single desire, but the wish of thousands and thousands of people.  Yes, childhood cancer is sad, but if we acknowledge it, face it head on, and make everyone aware of it, many children’s lives will be saved and many parents will not have to lose their child.

My wish is the single most passionate, heartfelt desire I have ever known, and with your help, I am hoping and praying that it will come true.

With my sincere appreciation for considering my wish,

Melinda 

In her book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, Melinda Marchiano offers an honest and inspiring portrayal of her cancer experience through the eyes of a teenager and proves there is medicinal value in love and laughter.  Melinda and I share a common bond.  We are survivors.  And we believe in the importance of empowering fellow survivors to live life on their own terms.  By sharing her story, Melinda is giving a voice to this global epidemic that needs immediate attention.  I am grateful to Melinda for having the courage to speak up and for her generosity in helping others fighting cancer.   – Lance Armstrong      

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

 

                                                               

My Make-A-Wish

Make-A-Wish is one amazing organization. What they do for children who have been diagnosed with life-threatening illnesses is beyond kind. I love reading stories in the paper, or seeing them on  TV, about children receiving their wishes. I imagine all of the pain, suffering, and despair they have endured and it makes the smiles on their faces mean everything to me– and I am sure it does to them too!

I have been contemplating what I should wish for a very long time. Yesterday, I submitted my wish to Stephanie– my wonderfully thoughtful and warm Make-A-Wish representative. This is what I wished for:

I’ve decided on a wish!  I want Oprah to do a show on childhood cancer. =)  I want it to be very clear that I am not wishing to BE on the show.  I am asking that she grant the wish of the 45,000 + followers of the “Oprah, Please Do a Show On Childhood Cancer” Facebook page.  This would lead to greater awareness and SAVE CHILDREN’S LIVES.  This is my most heartfelt and passionate wish yet!  I hope that you are doing well, Stephanie!   Hugs!

-Melinda

 http://bit.ly/br6Mrg

KSBY 6 TV Childhood Cancer Awareness Oprah Facebook Movement:

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

If you knew that you had only one wish, and you knew that with that one wish you could save children’s lives and lessen their suffering, wouldn’t you wish the same thing? How can I, knowing what I know about how desperate the need is for awareness, early detection, less toxic treatment, and funding for research, not make this wish? 

I would love  to see the National Cancer Institute make a huge change in their budget– to appropriate much more than the measly 3%  that is currently allocated for all childhood cancers. Seriously people (there I go again, addressing all of humankind:)) this is pitiful. Are children a priority in the United States of America?

How about children who are fighting for their lives against cancer?

I believe I have made my point…

 

 

Pin The Bag of Chemo on the Mass

 

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 :) ) 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?

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

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