A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘President Obama’

Melinda’s Imaginary Meeting With Dr. Harold Varmus

Childhood Cancer Action DaysMelinda has been applying for scholarships this summer. Usually they involve writing an essay from a prompt. This past week, Melinda took this writing prompt to heart– Who would you like to meet and why?


 

This is Melinda’s response…


 

“I sit on a metal bench, embellished and pleasant to the eye but rather uncomfortable.  Well-tended stalks of lilies color my periphery.  Staring down at my folded hands and resting elbows, I ponder how to break the news to the bench companion on my right.

“So, now what made you choose me as the direct connection you would want to have?”

I tighten my lips and keep the response in my head.  Well…I mean, you are the President of the United States.

Obama, attentive, shoots me a crooked smile.  Silence prompts him to speak again, this time in a more presidential tone.

“I was curious to hear more about how you believe our connection will positively influence the American peop—”

“Well honestly, Mr. President, I didn’t actually choose you.”  A moment of offended speechlessness, then his dignity returns.  I continue.

“I’m sorry, I don’t really know why this happened.  I mean, it’s great to meet you and all, but I guess they just assumed that I would want to be connected to the President.”  With apologetic hand gestures, I attempt to let him down easy.  He bites at the air and nods his head.

“Well…um…I’m very sorry for the confusion.”

My next words seem to fly out a bit to forcefully.

“No, no, no, that’s quite alright!”  I tame my waving hands back into my lap.  Out of the corner of my eye, I can see him settle back further, cross his legs, and stretch out his arm on the bit of bench between us.  His chin is upturned, his eyes darting back and forth.  Oh great, I just insulted the President.  I lean on the armrest—my finger a mustache as my thumb holds the weight of my head.  Hopeless for a good first impression, I find myself blurting out words once again.

“Well, I’m sure you’re a very busy man…have to get back to your office and all.  Um, I know there’s a lot goin’ on…the Middle East…all that.”  By now I’m twisting the knife in my own stab wound.  “And I’m sure it takes a lot out of you being President and all…I’m sure you could use a…a nap or someth—”

“You know, I appreciate that,” he now turns to me contemplatively.  “But I’d much rather you tell me who you did choose and why.”

Silenced, my eyes widen in doubt.  A reassuring and expectant nod encourages me to gather my words.

“Well, you see Mr. President, I was hoping to get connected with Dr. Harold Varmus, you might know him…maybe have had a couple meetings with him, actually.  He’s a Nobel Prize winning scientist for his work on the discovery of the cellular origin of retroviral oncogenes.  I’m not exactly sure what that means, but basically, he’s a very respectable man.  He’s a co-chair of the President’s Council of Advisors on Science and Technology as well—perhaps he’s given you some advising.  Anyways, he was born in New York, followed in his dad’s footsteps to become a doctor, and then even got his graduate degree in English from Harvard.  He’s been faculty at UCSF, and has spent years in laboratories prodding little cells trying to figure out how you and I both work.  Basically, he’s famous for being awesomely smart.  But that isn’t the reason I want to be connected with him.  You see, Mr. President, back in December 2007, a softball-sized tumor in my chest cavity was diagnosed as Hodgkin lymphoma.  It had taken five months to figure it out, and that meant more intense chemotherapy as a result.  The following six months was a blur of four rounds of chemo and three weeks of daily radiation.  I can remember my oncologist packing my whole family into a cramped clinic room to have ‘the chemo talk’.  Basically, it was in my patient rights to know of all the potential side effects, whether I wanted to or not.  Words jumped out—heart attack, kidney failure.  Suddenly just puking my brains out didn’t sound so bad, you know?  The worst part was that I had no choice but to grit my teeth and just step forward.  After the beast of treatment, I thought I was done, but I learned quickly that cancer is not over post-cancer.  A three-year eating disorder due to digestive damage, two trips to the ER in dehydration shock, and multiple visits to various specialists gave me insight into the lasting effects of treatment.  And so now I find myself here, grateful for the research that has been done in order for me to survive, but still haunted daily by physical limitations due to the toxicity of the treatment.  I began to hear the stories of other kids—ones that were diagnosed on such and such date and died four months later because there were no treatments for them.  None.  Not a single thing that could be done or even tried.  Natural entrance into the childhood cancer community has made me aware of some devastating statistics: it’s the leading cause of death by disease in children, nearly 16,000 kids will be diagnosed this year in the United States, 80% of kids have advanced stages when diagnosed as compared to 20% in adults, and over 2/3 of survivors will have life-threatening effects.  But perhaps one of the most alarming to me, Mr. President, was that all of childhood cancer—made up of 100 different types—receives a pitiful 4% of funding from the National Cancer Institute.  And even while adult cancers are getting 96% of funding, they are also receiving a huge chunk of support from pharmaceutical and other large corporations in the private sector.  These commercial giants don’t support childhood cancer because it’s ‘not profitable’; they say that it’s rare.  But 7 kids dying per day…that…that isn’t ‘rare’ to me.  It’s amazing…I’ve seen what has been done with breast cancer, for example, and the progress that has been made because of research.  Pink ribbons are everywhere—not too many people know what a gold ribbon represents.  Every penny childhood cancer receives for research, clinical trials, etc. comes from the NCI and a little army of cancer families and foundations having bake sales and wine auctions.  That just means that childhood cancer deserves more of the NCI’s budget.  This is where Dr. Varmus comes in—he’s the director of the National Cancer Institute…has been for four years now.  He’s extremely influential in the NCI’s decision of how much money is appropriated to various cancers.  I’d love to sit down with Dr. Varmus, share my story and, perhaps, the stories of the other kids and families I’ve crossed paths with.  I’d love to try to express what my heart feels toward childhood cancer and hope that he can take in and have some of it in his own.  I would like to tell him of the incredible, tangible difference that we could make together—for kids pulled out of trials because of lack of resources…for kids terminal at diagnosis because of no known treatments…for survivors that struggle with quality of life and wonder if the fight was worth it.  So, while it is wonderful to meet you, Mr. President, the connection that I believe can have the largest and most influential impact is one with Dr. Varmus.”

I’m only slightly apologetic for my passionate monologue as I once again pacify my gesturing hands.  But then again, he did ask.  Taking a moment, he rubs his chin to aid in processing my swarming words.  He takes a long breath.

“Um…actually, I appointed Mr. Varmus.  I, I know him quite well.”

My hair bobs as I whip my head.  It cocks with inquiry.  Obama carries on calmly.

“Yes, it is one of my many duties as, um, President of the United States, to appoint these kind of people.”  He is now the one turning the air with his hands.

“You want to meet him now?  Stop by his office?”  I’m certain his eyebrows can’t go much higher.  Stunned, it seems I barely get out a nod before we lift off the bench and begin to walk.  Wow, I’m going to meet Dr. Harold Varmus.  Right now.  I’m going to know him.  Imagine what we can do.  My heart does a little dance within me.  Look out, childhood cancer, your days are numbered.”

~Copyright by Melinda Marchiano  

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Something tells me that this imaginary meeting between Melinda and Dr. Harold Varmus may not be imaginary one day. I hope that “one day” comes soon!

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“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

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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

Gabriella Miller Kids First Research Act Signed by President Obama

“If I go, if I lose my battle then I’m going to want other people to carry on this war.”

                                                                                   ~Gabriella Miller

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Today, something extraordinary happened in the world of childhood cancer. President Obama signed the Gabriella Miller Kids First Research Act into law, with Gabriella’s family present. Gabriella was diagnosed with a brain tumor at nine years old, and became a fierce advocate for childhood cancer research before cancer stole her at ten years old. As you can see from her quote above, she now needs all of us to carry on the “war.”

http://abcnews.go.com/Health/wireStory/obama-signs-cancer-research-bill-memory-girl-23182252

http://www.wjla.com/articles/2014/04/gabriella-miller-kids-first-research-act-to-be-signed-into-law-101786.html


“This Act may be cited as the Gabriella Miller Kids First Research Act.

Termination of taxpayer financing of political party conventions; use of funds for pediatric research initiative”

The full text:

https://www.govtrack.us/congress/bills/113/hr2019/text

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“When you get cancer, you have to be all grown up and you don’t really get a childhood.”

                                                                                                                ~Gabriella Miller

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While I am feeling happy along with other childhood cancer advocates over what happened in Washington today, I cannot help but think of the Miller family. What did it feel like for them to be there for the signing today? How are they ever dealing with the grief over their loss of Gabriella? One of the things that strikes me most when I watch Gabriella’s videos is when she says, “If I die, I will be with my friends.” What an enormous burden these childhood cancer patients carry, not only fighting for their own lives, but emotionally fighting for their cancer-stricken friends as well.

If you have never “met” Gabriella, you absolutely must. Gabriella shows wisdom that comes only through suffering. The purity of her soul and her message will grab your insides and squeeze them until only love remains. Sweet Gabriella, may your mission continue. Your spirit lives. Your spirit will save the lives of many children in the future. To Gabriella’s family, thank you for raising a child with such tremendous insight, grace, and love. She has forever made an impact on my life. May she forever have an impact on our nation and our on our world.

http://www.thetruth365.org/2013/04/04/welcome-10-year-old-gabriella-miller-to-the-truth-365-documentary/

Gabriella Miller’s words: Sugar, Protein, and the need for Constant Awareness

https://www.youtube.com/watch?v=4a7NZxNMpcA

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“My biggest fear is that a little child is going to die.”

                                                                    ~Gabriella Miller

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

 

Guest Blogger: Lee Marchiano

Dear President Obama

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

Dear President Obama,

 

My name is Melinda Marchiano, and I am sixteen years old. I am writing to you today because I see an urgent need for citizens of our country who are in desperate need. The citizens I am speaking of are the smallest, most fragile, and most incredibly brave people you have ever seen.

The citizens I speak of… children with cancer.

Did you know that cancer is the #1 disease killing children in our country?

Did you know that when children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults?

Did you know that the National Cancer Institute and the American Cancer Society allocate a smidgen of their budgets to childhood cancer?

Did you know that there has not been a single new drug approved to fight pediatric cancer in the last twenty years?

Did you know that CureSeach believes—with adequate funding—a cure is within our reach?

On March 16th and 17th, Childhood Cancer Awareness & Advocacy Day will take place on Capitol Hill. Please support the “Creating Hope Act of 2010” that was introduced by Senators Brownback, Brown, and Franken, and other childhood cancer legislation.

There are 40,000 children in the United States fighting cancer as I type these words. They need hope. Their parents need hope and their siblings need hope.

We are forgetting these children. There is no major celebrity to speak for them. There is little awareness of childhood cancer in our society, and what this translates into is suffering children.

I love my country—a land where anyone can speak for what they believe.

I believe these forgotten children need a Children’s Rights Movement.

I am the first to join the movement. Will you be second?

With my sincere gratitude,

Melinda Marchiano

16 Year-Old Author of Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

Thinking of Anais on her Disney trip... have fun!

 

 

Thank You Note From The White House

I am deeply honored this evening.  I received a thank you note from our President Obama, and his wife, Mrs. Obama.  I believe this means they received the first edition of Grace that I sent to them last December.  I love knowing they received it, and I love their lovely good manners:)  The note is special to me, and I will save it. 

It is interesting to me that things like this happen, and they inspire me to be a better person.  I am thinking of our President, and what he needs most from us, as citizens.  We can be the best citizens by being the very best person we can be.  That “best person” is different for everyone.  I guess that we just look for what we have in ourselves to pass on and bless others. 

Why is it that blessing others is the greatest blessing we can receive?

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