A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘www.melindamarchiano.com’

“Talk is (Bleep); We Need Action” — The Truth 365

“Stop Talking and Start DOING!”
                                              ~Gabriella Miller
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Gabriella tells us to “Stop Talking and Start DOING!”

https://www.youtube.com/watch?v=QaoqnILa0l4

untitled

Are you laughing and crying at the same time after watching and hearing ten year-old Gabriella express her opinions about our elected officials? One of the greatest things about being around kids is they tell you exactly how they feel. Is there anyone else who feels they need to hug her and give her high fives?

The signing of the Gabriella Miller Kids First Research Act by President Obama is the result of a long, arduous, and fervent campaign spearheaded by two of the most passionate people Melinda and I have ever had the blessing of meeting, Mike Gillette and Dena Scarpelli-Sherwood. This progress for childhood cancer research can be traced back to their hearts to help children with cancer and to their willingness to dive into the unknown and “stop talking and start doing.” They produced The Truth 365 Childhood Cancer Documentary to raise awareness, raise funds for research, and to gather petition signatures, all with the goal of uniting the childhood cancer community to work together to end childhood cancer.

http://m.whitehouse.gov/photos-and-video/video/2014/04/03/president-obama-signs-gabriella-miller-kids-first-research-act

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“Talk is (Bleep,) we need action.”
~Gabriella Miller
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“WOW…A 10 YEAR OLD WITH MORE BRAINS THAN ANYONE IN WASHINGTON!”

 The Truth 365 Childhood Cancer Documentary
The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to children fighting cancer. The film features compelling and inspiring stories of children and their families fighting cancer as well as interviews with political leaders and several of the country’s most respected pediatric oncologists. With the help of thousands of volunteers and highly focused social media campaign, the film will inspire millions of people to show their support for children with cancer. Host: Melinda Marchiano
To learn more about The Truth 365, visit www.thetruth365.org or Facebook at www.facebook.com/thetruth365film .
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“By combining the powerful medium of documentary with the viral nature of Social Media, we aim to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, the nation’s top pediatric oncologists and several influential celebrities. In this election-year we need for our politicians to hear the cries of these children and their parents, who are desperate for funding, less toxic treatments, and ultimately a cure.”
~Dena Scarpelli-Sherwood
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http://www.thetruth365.org/one-voice/
http://www.thetruth365.org/petition/
My hope is that Gabriella, Mike, and Dena will educate you, enlighten you, and inspire you to do more than talk about making a difference in the world of childhood cancer. Let’s play Follow-The-Leaders, or become leaders ourselves. There is no time to waste. We must begin Smashing Walnuts today.
Thank you Gabriella, Mike, and Dena. Thank you!
http://www.smashingwalnuts.org/

The Truth 365 Childhood Cancer Documentary

The Truth 365 Childhood Cancer Documentary

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Why I Shave… Max is Forever Seven

Grace

Is it possible for someone you have never met to influence your life in deep, profound way? I am not speaking of a famous writer, thinker, actor, athlete, or speaker. The person who has had one of the deepest influences on my life is a seven year-old boy… a seven year-old boy who will remain seven forever.  

Maxwell Kincaid Nunn was born on February 6, 2003. Max passed on Thanksgiving Day 2010. 

From Max’s obituary:

“Max was diagnosed with a Primitive Neuroectodermal Tumor (PNET) of the Central Nervous System (CNS). 

Max enjoyed was hunting & spending time with his dad. He liked riding his quad. Time spent hanging out with his friends, sitting by bonfires, collecting gadgets opening the mail & riding in his dad’s truck were some of the things that made Max happy. He also liked to go fishing, playing sports, and listening to music.

Max was an awesome individual with a heart melting smile that touched the lives of countless people across the world.”

Max Nunn

What I want people to know about Max is not written in his obituary. While Max was valiantly battling brain cancer– and at seven years old– he began raising money for pediatric cancer research. Yes, adults, please listen up. At seven years old, while existing in a body riddled with cancer, Max Nunn fully grasped the concept that we need to raise money for research in order to stop the beast called childhood cancer. I loved reading the posts each day where Max would open a pile of mail– envelopes with dollar bills in them that Max would send to St. Baldrick’s Foundation. His family shared his battle with photos, videos, and words of truth.  Max’s smile could melt the polar ice caps. Max’s personality could light up the world in the middle of a full-blown power failure. Max’s heart to help children fighting cancer lit a fire in me. I can never think of Max without hearing him say, “Two bucks, I mean it!” Max was serious about raising money for pediatric cancer research; he had no hesitation in asking people to give. It wasn’t for him… it was for the kids.

The Nunn family

There is no such thing as giving too little, only a matter of giving or not giving. Every “Two Bucks” matters. 

It’s no surprise that Max’s mom and sister have both shaved their heads to raise money for St. Baldrick’s Foundation. Max’s dad also works passionately for the cause of raising money for pediatric cancer research. I have tremendous respect for the Nunn family’s decision to share Max’s story with us.   Because they chose to share, I have been able to learn what we need to do to, what I need to do. If I can raise money for research by shaving my head, and honor courageous children by doing it, then bring on the razor. Over the next month, as shave day approaches, I will be sharing stories of childhood cancer warriors. I want to remember, and I want everyone else to know, I am shaving to honor them. I am shaving because I love them. 

 Max Nunn

I have been given the gift of loving this boy named Max… who will forever be seven.  Although Max will forever remain seven, the seeds he planted in me will grow like Sequoia Trees. 

My love for Maxwell Kinkaid Nunn the Great is one HUGE reason I will become bald again. I can hear Max saying it now, “Two bucks, I mean it!” 

Please consider a Two Buck donation in honor and in memory of Max.

http://www.stbaldricks.org/participants/mypage/579474

Going Bald Again…This Time for The Kids

GraceBrushing my teeth in a reflective daze, I stare at my shampoo bottle…I won’t miss it.  Nor will I miss my brush… bobby pins- none of them.  I imagine what it must be like to feel the tickle of the breeze on nothing but delicate fuzz.  Towel in hand, I think about how many strokes it would take to dry my head.  Staring into the mirror, I try to envision others’ questioning glances.  Oh that’s right- I knew… I know.  Yet recollection is a mysterious thing.   While I can vividly recall my chemo-ridden body reaching for the razor five years ago, the chaotic emotions of the time have instead been replaced with gratitude, excitement- hope.

            Who am I to have a choice?  They don’t.  I didn’t… once upon a time.  My own trials through cancer have been glossed over with the faces of kids around the country- of those whose stories I heard while sitting intently at their bedside.  Amazement continues to knock on my soul. 

There is no choice but to fight-  no choice but to bitterly resist the chemo bag hanging beside you, yet surrender to it…  place your absolute trust and hope in it.  What if… what if you had so much certainty in that little, seemingly harmless, bag that you could let go… trust… know.  That you could give in and not face fear of slipping… slipping…. leaving. 

This is my desire, and one that the St. Baldrick’s Foundation works towards daily.  The number once private funder of childhood cancer research, they hold events worldwide each year.  St. Baldrick’s raised $33 million last year; this money provides grants for researchers who are working tirelessly to find less toxic treatments and cures for those children who face, and will face the same beast I did.  As my heart overflows with appreciation for my own life, yet sadness that others still fight the battle I know all too well, I find that hope is the path that must be taken. 

I have decided to join in St. Baldrick’s mission and participate in an event that is taking place on March 30th, 2013 at Oakland Children’s Hospital.  The deal?  No more shampoo… no more bobby pins, brushes… or anything of that sort.  In an effort to be in solidarity with cancer kids everywhere, to raise awareness, and to raise money to fund research grants, I will be shaving my head…. again.

If I refuse…I lose.  It is as simple as that.  What is hair, anyway?  Something that keeps your head warm- something that gets tied back or covered up on bad days.  It can be straightened, gelled, curled, and colored.  However, many people don’t realize what else it can do- create awareness, provide greater funds for research, better treatments, and hope for each and every child fighting. 

I am just one person, but if everyone allowed that thought to build a wall in front of them, no change would ever happen… no amazing things would take place.  And so I choose to do what I can…give what I can in this life that can, at times, tell you to give up- to not give because “it is not enough.” I encourage you to do the same.  We never lose by giving… only by passing an opportunity to give our own unique contribution.

For information about St. Baldrick’s and their mission, please visit: http://www.stbaldricks.org

To support my individual participation, my team, and children with cancer everywhere, please visit:

http://www.stbaldricks.org/participants/melinda

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

John and Vicki kiss my dome during treatment at Cottage Hospital in March 2008.

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!

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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