A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Greetings From Arizona

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

This morning, just as the roosters began crowing, Mom and I hopped into our Jeep Patriot rental car (who we have already fondly named “Hugo”) and began driving eastward. The windows are decorated with my non-award-winning artwork– childhood cancer awareness and HOPE signs. The back is packed to the brim for our three week trip, and I am so excited about the adventures and the possibilities that lie ahead. 

Each day brings new responses from the children’s hospitals we have contacted; although they have never heard of someone doing this, they have been wonderfully receptive and kind. Tomorrow morning, before we leave Arizona, we will see the brand new children’s hospital here in Phoenix. I won’t be able to visit with any of the children here because they are moving to the new hospital. I want to thank Teri from Phoenix Children’s Hospital for trying her very best to make it happen! Their staff is delighted about the move, and I have discovered that even the hotel desk clerk speaks of the new hospital with pride. 

Adventure is fun. Adventure with a huge purpose is thrilling. 

I know there are many, many children across the U.S. who would love to be healthy enough for adventure. I am grateful– so grateful– to be healthy enough to travel to see the children. I pray with all of my heart that my visits will somehow help to give them hope and strength. I pray this Tour will bring more people to help the children, more money for research, and that it will bring what we truly need right now…

A Cure!

Nurse Cyndi Kissing my Dome

Fight Like A Girl Post This Month is Poetry

 

 

 

 

 

http://www.thefightlikeagirlclub.com/2011/06/one-who-should-not/

 

 

 

 

Coming to a Town Near You… I HOPE!

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

Good morning, friends. It’s nice to have my brothers home from college for the summer. Even though they’re busy with their work schedules, and one is also extremely busy with his play schedule, I love seeing their faces and grabbing them with a big hug as I pass them in the hall. Maybe I’m thinking this morning of this because, in a few days, Mom and I will be leaving home for three weeks. Neither of us has ever been gone from home for that long. We need to get in lots of hugs before our departure! This of course includes Larry!

Since I last posted our BullHorn Itinerary, our trip has altered—or fine-tuned as Mom says. As we communicate with people and hospitals, she is “refining” so our trip can be the best it can be. Is there someone you know in a hospital in one of these places we will be visiting? This Hope Tour wants to meet them. Do you live in one of these places? Would you like me to share with your group? I there any way I can help bring childhood cancer awareness to your community when I am there? Please let me know!

melinda@melindamarchiano.com

6/17 Phoenix, AZ

6/18 El Paso, TX

6/19 San Antonio, TX

6/20-6/21 Houston, TX

6/22 – 6/25 New Orleans, LA

6/26 Atlanta, GA

6/27 Chapel Hill, NC

6/28 – 6/29 Philadelphia, PA

6/30 – 7/2 Boston, MA

7/3 Niagra Falls, NY

7/4 Indianapolis, IN

7/5 Leawood, Kansas

7/6 Denver, CO

7/7 Salt Lake City, UT

7/8 Sacramento, CA

I have to tell you, it is so exciting to hear from you! Joanne, Khadi, Deliece, John & John (That is two Johns, not someone named John & John!) … thank you! Each one of these people is doing great things for children with cancer, and I am honored and blessed to have the chance to thank them in person. Something very wonderful happens when people with the same passion connect. Yes… it’s like 4th of July fireworks! Crackle, crackle, BOOM!

It’s time to get the signs ready for the car windows.

46/7   

Thank you, Michelle, for sharing your beautiful design and most of all for your commitment to fighting childhood cancer. Your design will be shining on our car from Sea to Shining Sea.

I’mBringin’BunchesOfSpiralNotebooks&Pens

Hmmm…. Wonderin’ what I will have to write about?

Hope 46/7

The Quiet Place of My Heart

 

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

This is finals week.  My last final was today! Wow. Wow,wow,wow,wow!

So now, dance performances are over until August and school is out tomorrow.  Sigh…

Guess what I cannot wait to do?

Meet you!!!

I am leaving a week from tomorrow, and now that I have a moment to take in what is about to happen in my life, I feel like I need to go to the quiet place of my heart to seek Guidance.  How can I, little Melinda, leave this world a better place? How does this intersect with my great desire to help children with cancer? I pray that every step of our journey will help kids with cancer. I hope the  children I meet will share their lives with me in their own beautiful ways. I hope while I am gone, you might think about doing something like the following… making lemonade:)

 

 

One lovely way to help raise money for childhood cancer research this summer is to make some lemonade and have some fun.

Lemonade Stands near you

http://www.alexslemonade.org/search/alex_search

My friends at Pablove on Twitter asked me to vote for this boy… I love him!

http://kidswhogive.com/vote-on-entries/entry/?submissionId=57

Finally, one more linky-dinky today…  This is why we need research for less toxic treatments. The treatment is deadly for too many children… one is too many.

http://news.yahoo.com/s/hsn/20110525/hl_hsn/childhoodcancertherapiestiedtogastrointestinalissues

Okay… I found one more to share. I want to thank KSBY and Carina Corral.  You always show you care about ending childhood cancer, and I am grateful.  I am really grateful.

http://www.ksby.com/news/teenaged-cancer-survivor-and-published-author-adds-more-to-her-list-of-accomplishments/

Mom and I have tweaked the end of our trip a bit… I will update the schedule soon.  I really don’t own a BullHorn and I probably wouldn’t use it if I had it.  Well, hmmm… there is a situation for just about everything… and I am quite passionate!

I will love to meet you along the way!

I am going to go back now to that quiet place of my heart.

God whispers from the quiet place of my heart.

 

 

My BullHorn Itinerary

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

On this National Cancer Survivor’s Day, I find myself thinking more about those who didn’t survive.  I find myself stuffed with thankfulness for life and for love.  Please join me in spilling over a bit today…

I am very, very excited about a fast approaching “Mission.” 

I call it Children’s Hospital Hope Tour.

My mission (if you know me, please pardon the redundancy,) is to visit “the kids” fighting cancer. I want to know their names; I want to know their faces and I want to hear their hearts.  I want to hug them and share in their hope.  The mission is to love them.  The mission is to make sure that the children who lost their battle will not ever be forgotten.

Awareness. Yes, that is the next big piece of the Mission Pie. We need to keep telling everyone who will listen how childhood cancer research is seriously underfunded.  If people truly knew the facts about the lack of funding, there would be change.  If I have to get out my bullhorn and hang out of the car as we sit in traffic traveling through cities, well…. 

Here is a better idea– I will give you my itinerary.

If you see that I will be in your area, and have interest in having me “Get Out My Bullhorn” for you, please contact us at melinda@melindamarchiano.com

6/17 Phoenix, AZ

6/18 El Paso, TX

6/19 San Antonio, TX

6/20-6/23 Houston & Austin, TX

6/23-6/26 New Orleans, LA

6/26 Memphis, TN

6/27 Chapel Hill, NC

6/28-6/30 Philadelphia, PA

6/30-7/2 Boston, MA

7/3 Niagra Falls, NY

7/4 Indianapolis, IN

7/5 Leawood, KS

7/6 Denver, CO

7/7 Salt Lake City, UT

7/8 Sacramento, CA

I can’t wait to meet you!!!  Promise I won’t put my bullhorn directly into your ear:)

Big Hugs Anais!

 

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

 

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!

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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