A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘National Cancer Institute’

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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Land of Suffering

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

Dear Oprah,

This is Melinda again, with my daily plea, asking you to do a show on childhood cancer. What I have discovered is that the topic of childhood cancer seems to be some sort of taboo. No one wants to look at it, no one wants to talk about it, and as a result… no one knows about it.

Oprah, since no one knows about it, and no one talks about it, children are dying who don’t have to die. When children are diagnosed with cancer, 80% have advanced stages of the disease. The lack of awareness for childhood cancer is startling when you compare this fact with the fact that only 20% of adults have advanced stages of cancer when diagnosed. Imagine– you can close this gap by educating your audience.

Just ONE new drug has been approved to fight pediatric cancer since 1980. In that same period, 50 medications were approved to fight adult cancers.

The National Cancer Institute divided its $4.6 billion budget: breast cancer received 12%, prostate cancer received 7% and all 12 major groups of pediatric cancers COMBINED received less than 3%.

We are failing our sick children in this country BIG TIME. Please help set the wheels of HOPE in motion.

I just cannot stop asking. I can’t stop trying because I know there are many, many children out there who would love to ask, but their suffering makes it impossible, or their angel wings have taken them far, far from this Land of Suffering.

Still asking,

Melinda

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

Cure Kids Cancer!

 

 

My Make-A-Wish

Make-A-Wish is one amazing organization. What they do for children who have been diagnosed with life-threatening illnesses is beyond kind. I love reading stories in the paper, or seeing them on  TV, about children receiving their wishes. I imagine all of the pain, suffering, and despair they have endured and it makes the smiles on their faces mean everything to me– and I am sure it does to them too!

I have been contemplating what I should wish for a very long time. Yesterday, I submitted my wish to Stephanie– my wonderfully thoughtful and warm Make-A-Wish representative. This is what I wished for:

I’ve decided on a wish!  I want Oprah to do a show on childhood cancer. =)  I want it to be very clear that I am not wishing to BE on the show.  I am asking that she grant the wish of the 45,000 + followers of the “Oprah, Please Do a Show On Childhood Cancer” Facebook page.  This would lead to greater awareness and SAVE CHILDREN’S LIVES.  This is my most heartfelt and passionate wish yet!  I hope that you are doing well, Stephanie!   Hugs!

-Melinda

 http://bit.ly/br6Mrg

KSBY 6 TV Childhood Cancer Awareness Oprah Facebook Movement:

http://www.ksby.com/news/local-teen-cancer-survivor-joins-facebook-plea-to-oprah/

If you knew that you had only one wish, and you knew that with that one wish you could save children’s lives and lessen their suffering, wouldn’t you wish the same thing? How can I, knowing what I know about how desperate the need is for awareness, early detection, less toxic treatment, and funding for research, not make this wish? 

I would love  to see the National Cancer Institute make a huge change in their budget– to appropriate much more than the measly 3%  that is currently allocated for all childhood cancers. Seriously people (there I go again, addressing all of humankind:)) this is pitiful. Are children a priority in the United States of America?

How about children who are fighting for their lives against cancer?

I believe I have made my point…

 

 

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