A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

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.

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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

 

                                                               

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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

 

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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?

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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.

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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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