A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for May, 2011

NYC in a Nutshell

I have missed you… really, really missed you!

It seems like forever since I wrote. Maybe this has something to do with all that has happened since… whew!!!

As soon as Mom found out that my book was a Benjamin Franklin Award finalist, she began investigating and planning our travel to NYC. There are many people I want to thank for making our time an amazing and unforgettable time of my life!  I need to thank my Twin Friends, Mark, “Miracle Mary,” Tina, Polly, Hugh, and Vicki. These people made a huge effort to make my time in NYC incredible, and I am very, very grateful.

NYC-in-a-Nutshell

Arrived on Friday the 20th

 American Ballet Theater Don Quixote      Metropolitan Opera House 7:30

We thought we would arrive on time, but instead arrived fashionably late.  Who should we walk in at the same time with, but Sarah Jessica Parker? Yes, really. At Intermission, Mom and I met a lovely lady named Tina who used to dance with American Ballet Theater and has worked for them for 17 years. She graciously took us backstage where—I nearly fainted with this one—I stood on the stage, with my back to the closed curtain—at the Metropolitan Opera House in NYC while the finest dancers I have ever witnessed warmed up for the next act in front of my eyes. I had to keep reminding myself to breathe!

Thank you Mary and Tina!

Saturday the 21st

This day began with a great blessing. Have you ever met someone who you feel you have known all your life—even though you just met? Mom and I just “happened” to be in NYC at the exact same time as this someone. Hmmm… sounds like something The Great Conductor would arrange… like something only The Great Conductor could arrange!

Phantom of the Opera       Majestic Theater 2:00

Once again, “Miracle Mary” worked magic for me by contacting Polly. Can I just say right now that Phantom was the most amazing show—the most amazing talent—I have ever seen in my life???!  When Phantom was over, Mom and I met Polly, one of the performers, backstage and she gave us a backstage tour. Wow! To be able to go backstage and see all of the props, sets, and costumes was thrilling!  To top off the thrill, Polly introduced me to Hugh Panaro, the beyond spectacularly talented actor who played The Phantom. As talented as he was onstage, he was equally as gracious and kind when he greeted us backstage. As I was leaving, Polly gave me two very special gifts: a Phantom Poster and a pair of her pointe shoes—all signed by the cast.

Thank you Twin Friends, Mary, Polly, Hugh, and Vicki!

Sunday the 22nd

Nothing like a morning walk through Central Park! This was so much fun! It was beautiful, huge, full of surprises like gifted violin players and not-so-gifted trumpet players! It was all so entertaining and very enjoyable. We jammed in as much as we could before our next planned event:

Wicked   Gershwin Theater 3:00

I want to thank Vicki for helping us get great seats ahead of time… Mom and I thought of you when the friends sang the song about how their lives are better because they have known each other. We were SO happy to be able to see the show with Rachel, our friend who lives in NYC and is a huge advocate for children with cancer. Thanks Rachel for the great time and for the taxi lessons!

Monday the 23rd

How could we leave NYC without first seeing the Statue of Liberty??? We were up at the crack of dawn on our last day in NYC and on the Staten Island Ferry before the roosters were crowing. (Are there roosters in NYC?) We stood out on the bow of the ferry with the wind blowing in our faces and watched with wonder as Lady Liberty stood with her torch high above the harbor.

It is a site I have always wanted to see.

Another site we needed to visit before leaving was Ground Zero. I can only think of one word to describe the feeling inside me here… reverence.

As we ended our time there, I hailed the first taxi of my life… and it drove right on by us!!!!!!!

I did not give up, but attempted another wave. This time, the taxi stopped and it took us to Steps (a dance studio on Broadway) and I watched a class.

Our final NYC events:

Benjamin Franklin Awards Ceremony Bill Fisher Best First Book Nonfiction

This ceremony was at 5:00 at the Javits Center. We loved meeting and talking with publishers and authors; the food was good too! The category for my book was the second to last to be announced. To be one of the three finalists meant that I already felt I had won… but as the time grew closer to my category, I will admit that I could feel my hands go a bit clammy!

When IBPA announced Grace as the winner, I thought my heart would pound straight out of my chest!

As this award ceremony ended, we left and arrived at the next award ceremony just in time to receive a Silver Medal Ippy Award.

What a great, great time in NYC! Thank you, thank you to everyone who helped to make it the beautiful memory inside me that I will have always. I also want to thank everyone who has sent loving congratulations messages!

True success for my project will not come in the form of medals, trophies, or awards, but in more awareness for what children with cancer face… and ultimately, in finding cures. If medals and awards can help reach this goal, wouldn’t that be “Loverly”????????

 

NHS Dance Company

 

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First Pediatric Research Grants Given by The Pablove Foundation!

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

The month of May is Brain Cancer Awareness Month.  When I think of all the children I am aware of who have fought brain cancer over the past year, I wonder how anyone can be unaware that children get brain cancer too.  I guess it depends on what you are paying attention to.  I know of a little boy who lives near London who is fighting brain cancer, and he has made a list of things he would like to do before he says, “the angels come to take me to heaven.”

Although I live across the world from this boy, and many of my readers do as well, I am counting on the magic of the word-of-mouth/internet social media to help him receive his wishes.  Hold onto your heart as I you read the list below:

1.To go and visit some Tiger Cubs and have a cuddle;
2. A trip in a helicopter
3. Visit Jamie Olivers “15” Restaurant/Kitchens in Covent Gardens and go in the kitchen and see how it all happens!.
4. Visits a quirky unusual hotel with sports memorabilia or futuristic gadgets.
5. Visit a Westend Show:- Mamma Mia, Grease, Lion King.
6. To go in the control tower or behind the scenes at Gatwick Airport or any London based Airport.
7. For a Large touch screen TV remote (size of an Ipad) so he can turn the TV over…he cannot see the normal size TV remote!

Is there something you might be able to do? Web, please work your wonders!

Every time I hear about pediatric cancer foundations giving money to researchers, it gives me great hope that there will be a time in our future when cancer is dead. PabLove Foundation gave their very first pediatric cancer research grants today! Congratulations to them on this excellent accomplishment! I received this news in a tweet from them this morning, and they have asked me to spread this great news, so please pass it on!

http://pablove.org/news/first-ever-research-grants/

One other organization I want to tell you about today is…

“TeenPower4Life is a national movement of teens who devote their time, energy and abilities to bring about positive and extraordinary change in the lives of others. This fall, our walkathons nationwide will raise funds for the National Children’s Leukemia Foundation. Join us and walk for the cure wherever you live.”

If you would like to “Like” them on Facebook:

http://www.facebook.com/TeenPower4Life?sk=app_4949752878

Before I forget to tell you, I saw a photo of Lilly— taken after her shave for the brave event that I told you about. For some reason, I was expecting to see a shiny dome atop her head, just like the one I sported during my chemo treatments. But all I could see were her sparkling eyes and warm, loving heart.

Funny how it is when people live straight from their hearts… when you look at them, you don’t see a People Shell at all; you see pure love.

That’s what I see when I look at Lilly… pure love.

Here I am discovering my true inner baldness!

Loving Lilly

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

I have been thinking of Lilly all day long.  Today is the day she shaves her head for the brave, unselfish, honorable reason of raising money for St. Baldrick’s Foundation and for childhood cancer research.  Lilly is not yet a teenager, yet she has boldly stepped forward to carry on her brother’s mission of raising money to stop childhood cancer… even if it is two bucks at a time. 

I ask you today to show your love for Lilly. I ask you to do it now.  (I can see you shaking in your boots like I am looking at you, and you are right, I am!) There is a great saying in “The King & I,” where the King of Siam says, “Now is always best time.”  I have found this to be very valuable in my life; I am asking that you try practicing it right now by clicking the link below:

http://www.stbaldricks.org/participants/mypage/participantid/445497

Right now is the best time to act… and I would love for you to let me know about it by commenting!  Now that you have clicked the link, you are halfway there! (Don’t start sweating and panicking!)  You have the opportunity now to decide how much you would like to donate. I will not accept any excuses. “I can’t afford it” will not work with me.  I will just ask you to give up that Starbuck’s, or eat beans for a night, or even use less toilet paper (hee hee!) If Lilly can show love for her brother, Max, and other children fighting cancer with this exceptional act of love and kindness, the least we can do is dig deep… very, very deep within ourselves to locate something– anything– to give.  As Max would tell people, “Two bucks, I mean it!”  If you have “Two Bucks” to give… you have something wonderful to give!

May I please cover possible excuse #2?  “I don’t have time” won’t work with me either.  Get up five minutes earlier or go to bed five minutes later.  Give up five minutes of that silly television show that is garbling your brain cells and recognize we have a hero among us! 

Just like her brother Max, Lilly is a true hero.

It is a joy, and a truly humbling experience, to support Lilly.

I just did!

Incredible Super-Sib Lilly


Miracle Happy Dance!

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

The very first news I have to share is great, great news!

My buddy Braden Hofen received test results today… NED!!!!!  No evidence of disease!!!!!

Go ahead and do a happy dance, sing off-key at the top of your lungs, and if you live in a big city, stick your head out of the window and take a deep breath.  Ready? (This is for Braden, now…)

Yell, “Take THAT cancer!” 

This is 6 year-old Braden’s attitude, and I admit I love joining him in this sentiment.  You GO Braden, you Go!  For everyone who has been praying for him, thank you, thank you!

While we are on the subject of dances, I want to tell you about a 25 year-old woman named Jolene who has been fighting cancer since she was 17. On the tip-top of her “Bucket List” is to meet Ellen and dance with her on the show.  Well, some wonderful friends/angels came through with VIP tickets to the show on May 25th!  Now, her friends and supporters are posting a video on the Ellen Show Facebook wall showing her how much Jolene would love to dance with Ellen! They are asking people to please post and share this video:

https://www.facebook.com/video/video.php?v=2040929743405&comments

I hope you get to dance with Ellen, Jolene!

I don’t enjoy going from joy-filled news to disturbing, but I feel the need to pass this on.  I heard this story today about a woman who may have her children taken from her because she has cancer.

http://www.change.org/petitions/do-not-allow-nc-judge-to-take-alaina-giordanos-children-just-because-she-has-cancer

Finally, LIVESTRONG Community Impact Project voting has begun. When you click the link, you will be able to select a region and then vote for your favorite. http://vote.livestrong.org/

Just wondering. Do you still have colored hands for Brodie?

Sometimes miracles take a lot of prayer and a lot of work, but my goodness…

Braden…  NED…  Braden!

Miracles Do Happen!

Grace Recieves A Silver Medal Ippy Award– Finalist in Benjamin Franklin Best First Book Nonfiction

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

It’s two days after Mother’s Day, and today, I am writing about my mom.

As I begin to type, I search for the words to begin what I want to say–and instead of words–tears come rushing like rainfall down my face.  I love her.  I love her so much.

My mom listens to me.  She believes what I say. Without this gift she has given me, my cancer would not have been discovered until much, much later.  I would have suffocated.  But, my mom believed me when others did not.

And then… when my heart needed to give back in order to heal, guess who supported me every single step of the way? 

Then, when I began writing as a way of healing, she looked forward to hearing what I had written.  She believed it was something that could help others.  She took all of those spiral notebooks with scribbles and she typed the 90,000 words I had written into book form.  Have you ever typed 90,000 words?

It would have been easier to submit my story to a big publishing house at this point… but my mom’s Mama Bear instinct wouldn’t allow her to let someone else have the rights to my work.  She says it belongs to me as long as I am a minor! 

The next step has been an unbelievable amount of work for her, working to establish our publishing company, Happy Quail. Not many mothers and daughters have the opportunity to work together for a cause that both are passionate about.  By establishing Happy Quail, we have been free to make decisions about publishing my book that will benefit children with cancer.  Yes, the Quail is VERY Happy when we can do anything to help toward a cure!  

My mom has worked so hard that Grace: A Child’s Intimate Journey Through Cancer and Recovery has been honored with the following Independent Publisher Awards:

From IBPA website:

“The IBPA Benjamin Franklin Awards, which includes fifty-six categories recognizing excellence in both editorial and design, is regarded as one of the highest national honors in small and independent publishing. Winners will be announced at IBPA’s Publishing University, just prior to BookExpo America.”

2011 Benjamin Franklin Awards: The Bill Fisher Award for Best First Book (Nonfiction)

http://www.ibpa-online.org/pubresources/benfrank2011_finalist.aspx

Ippy Awards Silver Medalist Juv-Teen Young Adult Nonfiction #24

http://www.independentpublisher.com/article.php?page=1442

The very, very best thing about these awards is that they will help children with cancer. Awareness is the first step toward giving hearts stepping up to help.

Mom, your giving heart will make a huge difference—beginning right now—in the lives of not only children with cancer, but others whose light has gone out for a bit.

Your love for me is lighting the world. 

Coming out from school when my first books arrived!






Who Says a Watched Pot Never Boils?

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

Yesterday, I returned to Santa Barbara to the place where I received my life-saving treatment for cancer. Now, three years after my treatment has ended, I am reminded again how Cottage Hospital and the people who work there will always bring my heart to its utmost openness. I loved seeing Nurse Lisa and Nurse Cyndi (yes, the very famous Blue Chemo Fairy!) My visit wasn’t for tests or scans; it was to help raise money for Children’s Miracle Network Hospitals during their yearly fundraising event. Cottage Hospital is a Children’s Miracle Network Hospital. 

It means a lot to me to return each year for their fundraising event. I had the opportunity to encourage radio listeners to support Cottage Hospital and then do the same in a TV interview. Three years ago, I sat with my pink beanie covering my completely bald head while Paula Lopez asked me questions for a Children’s Miracle Network vignette. Yesterday, I had the pleasure of speaking again with Paula… only this time, with a full head of hair and the ability to breathe!

Three years ago…

http://www.sbch.org/Portals/1/Skins/CottageHealth/html/marchiano.html

 When Mom and I first walked into the cafeteria, who should we see?

A therapy dog all dressed up like a nurse!

Guess who else we saw? (For all who have read Grace!)

Dr. Pickert!  Guess what else?  He gets nicer and nicer every time I see him!

There will never be a time when I visit Cottage Hospital that I don’t gasp with trembling gratitude. The reality of my illness, the memory of me in that hospital bed… me rolling down the hall to surgery… me receiving treatment that saved my life… make me bow my head with humility.

Thank you, to everyone at Cottage Hospital.

Most people have heard of the concept “Survivor’s Guilt.” I find that my survivorship has had the opposite effect on me.

I think of Breanna, Max, Noah, Jayden, Nick and all the children whose lives I need to honor with my tireless devotion to what their lives mean. I will never forget them. This means fighting for a cure every day.

Life is one time. Living a “Lukewarm” life won’t do for me.

Turning up the heat to High…

Hi Life!  Full Blast Ahead!

Who says a watched pot never boils?!

One way to be the White Swan:)


Colored Hands for Brodie

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

Welcome to the month of May.  Is it just me, or is time moving at warp-speed?  I love May!  May is springtime and flowers and dance performances.

Mr. Boot has made his exit from my life. Bye Mr. Boot!

Heeeeeeeeeeellooooooo dance studio!!!!!!!!!!!!!!!

Are you feeling “spring-y” and wanting some fun? Want to help a young boy with cancer at the same time?  I love this idea from Sherry, who wants to help a four year-old boy who is battling a brain tumor. The boy’s name is Brodie, and Brodie likes to draw on himself. (Is it just me, or does this totally endear him?!) If you enjoy drawing on yourself—or even if you do not—this is a prime opportunity to put a smile in the heart of a boy who is in the midst of his battle with cancer. What do you say we get out the markers, write a message on our hands to Brodie, take photos of our brilliant artwork and email it to gobrodie@me.com ?

While you are wracking your brain for that creative saying (or dull- it doesn’t matter!) to write on your hands, I will pass on inspirational news, in case you have not yet heard:

St. Baldrick’s had their biggest fundraising year yet!

http://www.stbaldricks.org/about-us/headlines/view/headline/title/History+Made:+Largest+Fundraising+Year+Yet/id/1432

I hope this serves as motivation for everyone fighting childhood cancer, both individuals and organizations. The only way we will win the war against childhood cancer is through cooperation.  The more we communicate and share information, the fewer “dark, sinister alleys” there are for cancer to hide out in. The way my mom envisions it is like a game she used to play when she was little called Red Rover. Neighborhood kids would choose two teams. The teams would link arms (not just hold hands, but link arms because the bond was stronger) and then call over someone from the other team to try to run through to break the bond. If the person couldn’t break through, then they had to join the other team. Let’s use the Linking Arms/Red Rover concept to destroy childhood cancer.

Cancer will end up on a team all by itself—a Loser!

Please link, link, link.  Let’s make it so that cancer will have nowhere to run to and nowhere to hide. It’s sometimes easy to become discouraged… especially when we hear news of another child lost. This time, the child is Nick.  I ask you for prayers for his family. 

I ask you to wash away every bit of discouragement and replace it with a fire of hope.

When you send your photo to Brodie, remember that your action is so much more than what your mind measures it to be. When you give your time or your resources to fight childhood cancer, please remember it is so much more than your one act.

You are a crucial element of the united bond that will make change.

Makes life worth living, doesn’t it?

Kick Butt Brodie

www.melindamarchiano.com

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