childhood cancer research | Melinda Marchiano

A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer research’

Open Letter to All Who Have Ever Helped Children with Cancer

Thank you.

Thank you from the depths of my soul.

Without you and your beautiful hearts to help children with cancer, without your sacrifice, the celebratory events of this past Mother’s Day Sunday would never have happened. Without you, our precious daughter would have been taken from this world 11 years ago. Without you, I wouldn’t be sitting here with tears of joy falling freely from my eyes while my huge smile happily hurts my cheeks.

Without you, this day would have only been in my dreams of what could have been. Because of you, this day became reality. And of all days, this day was on Mother’s Day. As parents, we have hopes and dreams for our children, and most of us hope that one day, our child will fall in love and marry the person who has captured their heart.

On Mother’s Day, I had the enormous blessing of seeing our daughter marry the love of her life. The horror and the terror of her childhood cancer treatment could not help but be present in my mind and my heart. Children who have been stolen by cancer and the parents who grieve their loss were present as well. My heart spread all the way across one spectrum to the other.

M and V wedding photo Holy Trinity Veil

As I placed my head on my pillow that amazing night, I scrolled through a few photos I had taken. The emotions I held captive all day suddenly burst through the dam, and the floodgates opened. The stimulus? A photo of Melinda’s pure joy as she dances her first dance with her new husband. In the background, a man looks on with a look on his face that made me wonder what the thought behind that look was. I quickly recognized that his expression says, “I get to see the Happy Ending!” The man? Melinda’s pediatric oncologist, Dr. Dan.

Melinda and V 1st dance wedding

With a most humble gratitude, I thank each of you: doctors, nurses, child life specialists, clinicians, technicians, researchers, and the advocates I am honored to work with every day.

With renewed commitment, I promise to do everything I can to help stop childhood cancer… so all children… and all families… can receive their happy ending, too.

I love you dearly. I owe this joy in my heart to each of you. Thank you!

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A Night of Golden Lights at the White House- CurefestDC

After the Curefest DC Welcome Event at Nationals Stadium, the attendees all headed to President’s Park across the street from the front of the White House. I never would have arrived without the help of Karla, who introduced me to my very first ride on the Metro. Since I live in an area where there are rolling hills, oak trees, strawberry fields, and cows grazing, this was an eye-opening city experience for me. I know it’s normal for people who live in DC and other cities to travel on underground railways, but I admit that my usual Podunk surroundings make it so I am utterly amazed by the setting and all the people! Thanks Karla– I would still be standing in the station with my mouth open.

Is it any surprise that A Night of Golden Lights is the brainchild of none-other-than Tony Stoddard? (A Day of Yellow and Gold to Fight Childhood Cancer) Our time together at this event was exceptional. I wish I knew the name of the singing group who sang “If I die Young” — it was beautiful! I do have this photo of the singers with Ellyn Miller (Smashing Walnuts Foundation) and her son.

Mike Gillette, Emmy Award-Winning Filmmaker from The Truth 365, helped organize the evening’s events with Tony Stoddard. Thank you, Mike and Tony, for your never-ending passion and energy for the kids.

One of the most meaningful moments for me of Curefest DC came next. Tony began by telling us about his son, Cole. Cole died from Stage 4 Neuroblastoma. I highly recommend reading this article Tony wrote for Cancer Knowledge Network, telling his story. https://cancerkn.com/promise-son/ Being present to hear Tony tell his story is something I will always carry inside me, and what followed next will stay with me forever. Parents and brothers and sisters took the stage to tell their stories. We need this. Giving these people a microphone and a caring, compassionate audience was beautiful. Each person who shared seemed comfortable that they were talking to a group who truly wanted to listen. We were all “family” on this night. We were all one. We were not separate. We were not alone.

This tender and precious time of sharing set the tone for what we would do next… walk to the front of the White House.

Slowly, almost somberly, the crowd began walking. I walked behind Tony, imagining what must be going through his mind and his heart. It was a time of reflection as our group neared our destination. If someone dropped a pin, we all would have heard it. It was a time of honor. It was a time of respect. It was a time of memory. It was a time of conviction that we need to do all we can to see that the pain and suffering present inside so many would not go without acknowledgement– would not wither without action or purpose.

As we lit and lifted our golden lights together, we lifted our voices to sing, “Amazing Grace.” We sang the first verse through three times in a row. (Everyone chuckled when they announced we would do this because it is the only verse everyone knows!) A Night of Golden Lights at the White House was an evening I will always remember. I was wishing our president was not vacationing, so he and his family could look out their window and see hope for children with cancer. My next thought was, “It doesn’t matter.” What matters is that all of these people gathered with One Voice for our kids.

To be among these people is life-changing. Each person I met left a piece of their heart in mine. I hope I was able to leave them a warm piece of my heart as well.

Guest Blogger: Lee Marchiano

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Dear Cincinnati Bengals – Coming Together For a Greater Purpose

Austin Munoz –Moorpark Football Senior Night

Dear Cincinnati Bengals,

Thank you.

As a parent of a childhood cancer survivor, I praise your recent decisions surrounding Devon Still and his daughter, Leah, who is fighting stage 4 neuroblastoma. No one knows the darkness of those words, “Your child has cancer,” than parents who have heard them. No one knows the hopelessness, the despair, the panic, or the chaos of that moment than parents who have lived it.

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“Dealing with cancer is like a whole different world.”

~Devon Still

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What you have chosen to do is a mark of excellence. Your decision to retain Devon— even when his mind and heart were quite understandably elsewhere— is top-notch. Your organization’s decisions demonstrate the strength of character, compassion, and integrity of those in your front office. If I could, I would hug each and every one of you. As I did, you would see the tears in my eyes that are now rolling down my cheeks. It’s hard for me to believe that not everyone makes choices like you have. It touches me deep into my soul to see you have chosen humanity over financial gain. I believe you will see this is a wise choice as well in the not-so-long-future. Devon will become an even better player than he has ever been. Once you have witnessed your child fight for their life, you become a warrior too… one who will move the heavens and Earth to accomplish your goals.

Cincinnati Bengals, you are one class act.

And you haven’t stopped there. Not only have you retained Devon, but you have gone an entire football field farther by stepping up to raise money for pediatric cancer research! This is a gift that will save children’s lives!

Leah will be in my prayers. Devon, his wife, and his family will all be in my prayers. The entire Bengal organization will be in my prayers of gratitude.

Thank you for kicking childhood cancer out of Paul Brown Stadium!

May many other organizations follow the lead you have taken. You have set a fine example of coming together for a greater purpose!

With sincere thanks and squishy hugs,

Lee Marchiano

Momcologist & Childhood Cancer Advocate

“It’s not all about competition. It’s not all about what you can do on the field, but we come together for a greater purpose.”

~Devon Still

youtu.be/xl0sjEWKYI8

Photo shared from Twitter @dev_Still71

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http://www.cincinnati.com/story/sports/nfl/bengals/2014/09/14/cincinnati-bengals-devon-still-leah-still/15647737/

Help the Bengals SACK PEDIATRIC CANCER

https://www.pldgit.com/campaign/768450939739702307

Devon Still jersey– $15 goes to pediatric cancer research. (Over $400,000 raised in just four days!)

http://www.cincyshirts.com/cincyshirts//still-strong-devon-still-shirt.html

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If Childhood Cancer was in Human Form…

Nurse Cyndi, the Blue Chemo Fairy

The truths in my last post about what childhood cancer has in common with landing on the moon continue to circulate through my mind and heart. What speaks loudest to me is that we are ignoring the urgency of the need for cures for childhood cancer. There is so little awareness of childhood cancer that we accept “what is.” Many people assume that any child with cancer can go to St. Jude’s Children’s Hospital and receive free treatment that will cure them for life.

Ugh.

There is no known cause for childhood cancer.

Getting a proper diagnosis for a child with cancer can be an all-out mission of searching.

When a child is diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults.

Treatment for childhood cancers (if there is one) are ancient.

“Research for children with cancer-especially for those with solid tumors like sarcomas and brain cancer—lags nearly two decades behind their adult counterparts.”

~Eugenie Kleinerman, M.D., Division Head, Division of Pediatrics, TheUniversity of Texas MD Anderson Children’s Cancer Hospital

NCI funding for childhood cancer research has been dwindling, with a 30% decrease over the past decade. Pediatric cancer research receives a tiny 4% of the total NCI budget. This is critical. Federal funding for pediatric cancer research is vital, due to the fact that pharmaceutical companies do not see returns on their investments like they do for developing drugs to treat adult cancers. Virtually all the funding for pediatric cancer research comes from the NCI. Cuts to this budget greatly harm the Children’s Oncology Group and block medical discoveries that will lead to saving the lives of our children.

“Accounting for inflation, NCI’s funding has decreased by more than $1.1 billion (24.7 percent) since FY 2003.”

(The American Recovery and Reinvestment Act of 2009)

Where I really want to go here is beyond the statistics. We are talking about children. We are talking about children who are fighting for their lives. We are talking about seven children dying from cancer each and every day in our country. We are talking about lack of research which means outdated treatments that cause a lifetime of suffering—if a child does indeed survive.

Imagine…

Imagine that childhood cancer was in human form, not disease form.

Would we carry on with our lives as if we had not a care in the world while an assassin showed up and killed 7 children each day in this country? Would we call in the FBI, the Navy Seals, and every single solitary team that could possibly snuff out this killer? Would we develop ways to protect our children from this evil monster? Would we wait a day, a week, a month, a year, to act?

If childhood cancer was in human form, we would have already captured and killed it.

Just because childhood cancer is in disease form does not mean this is not urgent!

As I prepare to travel to Washington, D.C. next week for childhood cancer events, including Curefest, I keep thinking of Erin Griffin and Gabriella Miller. Both girls spoke at last year’s event. This year, they will not be able to attend in person. They will be viewing the event from heaven.

This IS urgent! THIS IS URGENT!

Sometimes I wish childhood cancer was in human form. I wish it could meet Mohammed Ali in his prime in the ring.

Pin The Bag of Chemo on the Mass

Guest Blogger: Lee Marchiano

Something you can do today to help end childhood cancer:

https://www.curebraincancer.org.au/page/98/petition

http://4sqclobberscancer.com/2013/02/24/dear-congressman/

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Mr. Jon Lester, Please Meet Mr. Tony Stoddard. Light Major League Baseball Gold for September

Red Sox Pitcher Jon Lester

There was a story in the news last week that grabbed my attention because our family is what you call “a baseball family.” Melinda’s brothers played Little League ball, her dad coached, and she sat in the stands for countless games, cheering her brothers on. My first trip to a major league baseball game was to see the Red Sox play at Fenway Park in Boston in the late 1960’s. Gosh, do I ever I remember the excitement of seeing the Green Monster and my favorite player, Yaz—Carl Yaztremski. So, when I read last week that Boston Red Sox pitcher, Jon Lester, is raising money and awareness for pediatric cancer, my Red Sox Fan Meter went sky high.
Jon Lester was diagnosed with non-Hodkins Lymphoma in 2006; now he and a few of his teammates, along with players from other teams, are working on a project called “Never Quit” to encourage children battling cancer. For many children, meeting a major league ballplayer would be the thrill of a lifetime. For children in cancer treatment to be able to meet Jon- a cancer survivor himself- has got to be highly inspirational and even healing.

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“Lester has big plans to expand the program, in Boston and beyond. He hopes to bring in players from other sports to help, especially in cities that don’t have baseball teams.”
~Don Fair, coordinating producer of Fox News’ Los Angeles bureau

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Is there anyone else thinking what I am thinking? I think Mr. Jon Lester needs to meet Mr. Tony Stoddard. In case you missed yesterday’s post about what Tony Stoddard is doing to help children with cancer, you must know!
https://gracemelinda.com/2014/04/07/a-day-of-yellow-and-gold-to-fight-childhood-cancer-tony-and-cole/
Every time I hear of someone using their lives to help children with cancer, it inspires me and encourages me to do the same. Whenever I join with others who feel strongly about the importance of making a change in the world of childhood cancer, the results of the outcome of our work jumps exponentially. This is what will happen when Jon and Tony meet. Tony, I think Jon might know one or two people in the Front Office at Fenway Park. I think Jon might know a bit about how one would go about Lighting Major League Baseball Stadiums yellow and gold for Childhood Cancer Awareness Month in September.
And the best news of all, Tony, I will bet—I will double-down—that Jon has a heart that is willing to help you make this happen. Jon, will you please help honor these warriors? Will you please help Tony spread awareness that will lead to funding for cures? From the work you have already done, you’ve demonstrated you feel our children are worth every bit of effort and sacrifice. Thank you for all you are doing, Jon, and thank you for your consideration to step up to the plate to accomplish even more… for Tony… for Cole… for all the kids who should never have to face the Monster. The only Monster I want our children to face is that big Green One I marveled at as a kid at Fenway Park!

http://www.foxnews.com/sports/2014/03/31/opening-day-ace-jon-lester-hopes-to-shut-out-childhood-cancer/?intcmp=latestnews

Tony and Cole

Guest Blogger: Lee Marchiano

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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

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

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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

Guest Blogger: Lee Marchiano

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Video

St. Baldrick’s Poetry

Beauty, Compassion, Hope, Change
Help me re-define Beauty
Turn Compassion into Action
Show the Power of Hope
Convey the Meaning of Sacrifice for Change

St Baldrick's Flyer

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

Written

on February 8, 2013

Going Bald Again…This Time for The Kids

Brushing 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 30^th, 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.

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Stand Up 2 Cancer and Taylor Swift, Turning Tears Into Hope

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

“And we wept that one so lovely should have a life so brief.”

~ William Cullen Bryant

“One so lovely”…

The attention to childhood cancer in last night’s Stand Up 2 Cancer production was HOPE for my spirit. Stand Up to Cancer has partnered with St. Baldrick’s to create a Dream Team; research means HOPE in so many ways. There are children who need treatment options now, right now.

PAC2 brought me this great news in my inbox today! I could not summarize this or explain it any better:

“Headed into last night’s show, while SU2C had funded some childhood cancer specific research, it had yet not formed a Pediatric Dream Team (i.e., larger, higher-dollar, multi-institutional research projects). There are seven existing SU2CDream teams.

But yesterday’s show and the collaborative efforts of St. Baldrick’s and SU2C are going to change that. It almost seemed like the majority of the show was focused on kids! Having Julia Roberts caution viewers that cancer “kills a child every four hours in this country.” Having Justin, St. Baldrick’s Ambassador Kid, featured so prominently, having Taylor Swift dedicate her song to Ronan, and the hearts touched by Avalanna’s story are all giant leaps forward for childhood cancer awareness!! Reaching a nationwide audience no matter what channel you tuned in!! Leveraging our ‘normal’ audience an order of magnitude, or two!!

Hopefully a prime example of Awareness–>Funding–>Research–>Cure”

Thank you to PAC2 for always bringing us updated news!

Taylor Swift’s song to Ronan:

http://www.youtube.com/watch?v=1ITrd7fM6aY

When we see the faces of childhood warriors, the youngest among us who fight cancer, they seem to always, always have a smile, even when their suffering is great. While they suffer, they think of others. They don’t want others to be sad because of their suffering. They don’t want to be their suffering.

“People know me for my happiness. I don’t want people to think of me for sadness.”

~ Jack Bartosz (August 24, 2012)

And so these brilliant spirits among us teach us strength. They teach us about courage and about what is truly important in our lives. They teach us not to be petty, or mean, or frustrated. Instead, their characters lead us to better ourselves. They lead us to the paths of compassion, gratitude, acceptance, and pureness of love.

I love them. I love these children with every speck of my heart. For this reason, I am one very happy Melinda! Stand Up 2 Cancer has stepped up to the plate for the kids!

SU2C, YOU ARE AWESOME!

Taylor Swift…

I keep searching for the words to thank you for your beautiful song, but it’s hard for me to see the screen while I type– and there are no words. If you could see the tears falling over my cheeks, you would instantly know the extent of my gratitude. Tears of the gratitude type speak volumes. Thank you!

To all of my AMAZING nurses, and to all the others… Thank you!

Did you know you can Be a Part of The Cure?!

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A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer research’

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“And we wept that one so lovely should have a life so brief.”

~ William Cullen Bryant

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