A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Grace: A Child’s Intimate Journey Through Cancer and Recovery’

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!

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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!






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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:)


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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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Love Cannot Hate, It Can Only Conquer

Cancer hates love.

How do I know?

From what I know about the world of childhood cancer, I know that love can deal cancer its fatal blow. I’m not saying that treatment isn’t necessary– just that treatment combined with piles of love is medicine cancer can’t take. What I am saying is that cancer hates love because it can’t take our love away from us. Cancer can torture and take away People Shells, but it can’t rip the love from our hearts. Cancer must hate love, but love cannot ever hate cancer.

Love cannot hate, it can only conquer.

Love never, ever fails.

I remember moments during my battle with cancer where I knew I had the choice whether to live or die. Guess why I chose to fight? Love.

This does not mean that fallen childhood cancer “Messengers” did not choose love. It means their body could not withstand the Monster. Their tiny “Shells” had enough. Even when the sweet, wise Messengers are gone from the Earth, they remain in the hearts of so many of us—I do believe our love is multiplied from them being who they are. We learn to love better and deeper long after their bright smiles are no longer here. Cancer #cannottouchthis!

Please pray for the family of Jayden… a beautiful Hope Hero I had the blessing of meeting just a short time ago at Braden’s Run. Cancer took her from us.

“Don’t keep hugs wrapped up inside you, un-wrap them and give them away.”

                                                                                              ~Melinda Marchiano

 

No reason to keep one speck of love inside you either… give it all away.

Don’t you love when love conquers???!  Who is in your heart?

Love you Max!

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LoveBug, Legislation and Beaver Dams

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

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

“We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.“

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

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Oprah’s Last Call

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

I received a message on Facebook today from a lovely lady named Suzie, and she told me about Oprah’s “Last Call.”

Suzie… you know I had to… thanks for informing me:)

Dear Oprah,

I do have a dream.

What I dream of is an end to childhood cancer. While I recognize that there is no way to accomplish this in one show, my heart searches for the words to explain to you the enormous impact you could have in the lives of children and their families for years to come. The impact from this one show would be felt throughout the world, throughout time.

My dream begins with “HARPO-Hook-Up” bringing together a team of experts on childhood cancer to educate your audience.

Some daunting facts: childhood cancer is the #1 cause of death by disease for children in our country. When children are diagnosed with cancer, 80% are at advanced stages, compared with 20% in adults. The National Cancer Institute and the American Cancer Society appropriate a tiny portion of their budgets for childhood cancers. For children who survive, 2/3 will face serious health consequences as a result of their treatment. For some children, surviving cancer treatment is just the beginning of a new nightmare. Many families are left emotionally and financially devastated.

What I dream of is awareness. What I dream of is an assembly of passionate people– outrageously intelligent scientists, brilliant doctors, and childhood cancer organization personnel who will speak together at a big table (yes, like Mr. Trump’s big table!)

What I dream of is a huge surprise for the doctors, scientists and children…BIG funding for a cure. Awareness is the huge beginning obstacle, but what needs to follow to make my dream a reality is a large donation of money for childhood cancer research. The biggest and best surprise of all would be adequate funding to build the BIGGEST & BADDEST Childhood Cancer War Machine ever built. We do not have a day to waste. There are 40,000 children fighting cancer in the United States this moment.

My dream is to win the war against childhood cancer.

Please Oprah… let’s fire up the Tank and start blasting.

Hope!

 

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Pearls of Wisdom and Rusty Gates

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

“Make that change” ~ Michael Jackson

It makes me wonder. I wonder why humans spend enormous amounts of time focusing on what we are getting or not getting—instead of examining what we are giving or not giving.

I wonder where and when, “Me, me, me!” became the rule rather than the exception.

Would you like to know about the glaring exceptions to this dreaded state? I see exceptions everywhere I look in the world of childhood cancer. I see Mr. Tom Nunn ready to tattoo his head to raise money to fight childhood cancer and I see his wife, Jodie, prepared to shave her head. I see their sweet daughter, Lilly—at ten— willing to shave her head too. Not only do they do all of this, but they collect cans, have bake sales, hold continuous online auctions, and also collect gold items and old electronics. All of the money they raise goes straight to St. Baldrick’s. In all that they do, I feel their love for Max. I love how they have chosen to honor their love for him by diving head first into the water to help other children.

In addition to Lilly Nunn, there are more children who have received and processed “The Pearl of Wisdom” about giving. One of these kids is Nino Mireles. Nino’s sister fought cancer as a toddler, and she is now a survivor. Nino has created something delightful by combining his love for cancer children and his artistic talent. He paints lively, colorful murals to make children happy and at the same time he is raising money for the Teddy Bear Cancer Foundation and Cottage Hospital.

http://www.wix.com/ninom94/muralsforhope

Lilly and Nino are givers. Givers are the humans who “Make That Change.”

Thank you, Lilly and Nino. You are making this world a better place to live. Your Pearls of Wisdom are shining for other youth around you to notice. When they see what you are doing, they will feel the goodness of your heart and want to do something too.

Sometimes when we look inside ourselves, we discover that we hold the keys which unlock the old rusty gates imprisoning our potential to give all we have to give.

Here’s to unlocking a multitude of rusty gates.

“Make That Change.”  ~Thanks Michael… for your dancing:):):) and your love.

From Noah’s mom today:

NOAH’S STATS WONT STAY UP BECAUSE THE INFECTION IS SO BAD, THE XRAYS FROM LAST NIGHT & THIS MORNING LOOK WORSE. HE DOESN’T DERSERVE THIS! PLEASE LORD HEAL OUR BABY!

I want to adopt the Nunn family!

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Young Adult Packages

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

The very first thing I want to share with you is an update from Noah’s mom…

 

“NOAH IS DOING A LITTLE BETTER TODAY, HE LOOKS GOOD TODAY. HIS LUNGS LOOKED A LITTLE BETTER TODAY. HIS SWELLING HAS GONE DOWN MORE TOO. JUST TAKING BABY STEPS, KEEP PRAYING WE LOVE YOU ALL GOD BLESS”

Thank you for all of your prayers for Noah and for the other children I tell you about. My wonderful friends from Youth Cancer Trust (YCT in the UK) have asked me to pass on this story:

http://www.kevslifeline.moonfruit.com/

I have come to love the folks at YCT, and I appreciate so much the work they do. One of the things I love about meeting people from all over the world is learning new terms… this one is a term of endearment. When I receive a tweet or message from YCT, they call me “Poppet.” I have to admit that I love this! Do you remember the scene in “Pirates” where poor “Poppet” is being oogled by the two scary dudes— remember the one with the eye that pops out?! My brother, Dean, and I have used this scene as a spontaneous repeat in life… whenever giggles become necessary!

“Where are you Poppet?”

Love all of you Poppets at YCT!

One more thing I don’t want to forget to tell you is how wrong my expectation was about kids’ reactions when I speak at schools (United Way project) about working hard. I expected a handful to respond positively, but Mesa Middle School students surprised me last Friday. Not only were they polite, interested and enthusiastic, but they asked questions that told me they were listening, that they care, and that they are ready to work hard so they don’t waste one drop of potential.

Do you know what this tells me?

This tells me that we are not giving our youth enough push, not enough vision of what can be, not enough belief in the talent, intelligence, ambition, or creativeness wrapped up in Young Adult Packages. They want to be pushed. This tells them someone believes in them.

I believe in them– 100% of them.

One example of a creative group of young people who are raising big money for pediatric cancer: http://www.collegian.psu.edu/archive/2011/02/20/thon_total_grows_tops_xxxx.aspx

What do you think? Dance. Melinda… dance… raise money for childhood cancer research.

Childhood cancer needs to go down!

Creative cloning going on in the mind of Melinda…

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Braden and Noah

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

In less than two weeks, I am going to meet Braden Hofen at a childhood cancer fundraising event called Braden’s Hope Run.

http://www.facebook.com/BradensHopeRun

Braden’s Hope

Braden’s Hope was born after 6-year old Braden Hofen was diagnosed with relapsing, Stage 4 neuroblastoma and he and his family were told there was no known cure. Just a few short months later, Braden’s mom was diagnosed with Stage 2 breast cancer. The amount of information about her cancer in comparison to what is known about neuroblastoma was staggering. Braden’s mom began researching to find an answer as to why there was so much more known about her cancer in comparison to her son’s.

There are times when our language is entirely inadequate to describe what we are feeling inside, and this for me is one of those times. Braden is a remarkable cancer warrior who I have grown to love. His spirit and determination make him unstoppable and the love he shows to others through his own trauma makes me dig deep to discover how I can become a better me.

One example comes straight from his mom’s update today. Braden did not want his brother Zach to get a “Pokey.” Zach was only getting his yearly check (and we all know that  Braden endures “Pokeys” galore,) but Braden needed to voice his love and protection from those dreaded Pokeys for his dearly loved brother.

And how old are you Braden?

Six?

Today I want to thank Braden’s family for their tireless dedication to stopping childhood cancer and for creating Braden’s Hope Foundation!

Every single day there are children battling cancer and fighting for their lives. There are children right now on life-support. Please pray. Please do everything you can to help.

I am praying for Noah. His family is praying for a miracle and I am praying for the same miracle. Noah is eight years old and has been fighting cancer for over a year. Please send many prayers– Colorful Beams of Light to Heaven– so many that they paint the sky with our love for Noah.

Prayers. Miracles.

Noah…

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