A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Children’s Oncology Group’

If Childhood Cancer was in Human Form…

Nurse Cyndi, the Blue Chemo Fairy

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.


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 We are talking about lack of research which means outdated treatments that cause a lifetime of suffering—if a child does indeed survive.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 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

Pin The Bag of Chemo on the Mass

Guest Blogger: Lee Marchiano

Something you can do today to help end childhood cancer:




Hyundai Hope on Wheels Has Just One Wish… #EndChildhoodCancer


“We Have Just One Wish… #EndChildhoodCancer “

                                                                      ~Hyundai Hope on Wheels



Every 36 minutes, one more child in the United States is diagnosed with cancer. Each year there are 15,000 new childhood cancer patients, and there are over 40,000 children who are currently in treatment. Two out of three children who survive will suffer lifelong effects caused from their cancer treatments. Our children need—absolutely need— politicians, celebrities, businesses, sports organizations, essentially everyone who walks the Earth and breathes, to act to #EndChildhoodCancer We are all called to be Gold Spokes in the Wheel speeding its way to cures.

One of the stellar “Gold Spokes” in the “Wheel” on its way to end childhood cancer is Hyundai. On this day, Hyundai is kicking off their 16th annual Hyundai Hope on Wheels program. Over the past 16 years, they have raised over $86 million to fight pediatric cancer. Yes, $86 million! Michelle Williams has recently joined Hyundai to help them in their wish to #EndChildhoodCancer

On April 9th of this year, Hyundai Hope on Wheels announced a $2 million grant they awarded to fund Children’s Oncology Group’s Project:EveryChild. This grant will allow doctors and researchers access to thousands of cancer specimens in an enormous database at the Hyundai COG Biorepository.



“Hyundai’s generous support to Project:EveryChild will make a significant difference in our ongoing battle against childhood cancer,”

“This crucial funding will ensure that every child diagnosed with cancer in the U.S. will be eligible to participate in and benefit from the advances in research from Project:EveryChild, regardless of the rarity of the type of cancer.”

                                                                                        ~Dr. Peter Adamson

                                                Chairman of the Children’s Oncology Group


Now that we see how this automobile manufacturer, Hyundai, has huge ambitions to help our kids, I HOPE more and more consumers will turn their attention and their dollars to show their appreciation to Hyundai.

Thank you, Hyundai Hope on Wheels! Very best wishes to youth ambassadors, Ashley Burnette and Kenny Thomas!

What’s in YOUR garage?

Kenneth and Ashley National Youth Ambassadors for Hyundai Hope on Wheels

Photo shared from Hope on Wheels Twitter Page  @hopeonwheels https://twitter.com/hopeonwheels

Guest blogger: Lee Marchiano


Time to Take Action– 2014 Childhood Cancer Action Days

2014 Childhood Cancer Action Days

Registration opened today for the 2014 Childhood Cancer Action Days in Washington, DC. The Alliance for Childhood Cancer will be the host of this two-day event that will encompass advocacy training and Capitol Hill meetings with Congressional Representatives. The training will take place at the American Society of Clinical Oncology (ASCO) in Old Town Alexandria, VA. Childhood Cancer Action Days not only educate people who want to learn more about how they can institute change, but they provide everyone in the childhood cancer community an opportunity to share their concerns about current issues before Congress.


Monday, June 23, 10:00 am- 6:30 pm / Training and issues presentation, by Soapbox

Tuesday, June 24, 8:00 am- 5:00 pm / Kick-off and Hill visits

The Alliance for Childhood Cancer is a uniting force in the childhood cancer community. The following is a list of members in their organization from their website.

American Academy of Pediatrics , American Cancer Society , American Cancer Society Cancer Action Network , American Childhood Cancer Organization , American Society of Clinical Oncology , American Society of Pediatric Hematology/Oncology , Association of Pediatric Hematology-Oncology Nurses , Association of Pediatric Oncology Social Workers , B+ Foundation , Children’s Brain Tumor Foundation , Children’s Cause for Cancer Advocacy , Children’s Oncology Group , CureSearch for Children’s Cancer , Leukemia & Lymphoma Society , National Children’s Cancer Society , Pediatric Brain Tumor Foundation , Sarcoma Foundation of America , Society of Pediatric Psychology , St. Baldrick’s Foundation

Melinda and I just registered. I encourage others who share our passion to make a change in the world of childhood cancer to do the same. You don’t need to be a member of any of these organizations to register; parents, survivors, and all advocates are welcome.

We need research. We need less toxic treatments. We need access to medicines. We need supplies of medicine that don’t run out. And the list goes on…

This is the registration link!


H.R. 2607: Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act


H.R. 2019: Gabriella Miller Kids First Research Act


We need to act and do much, much more to end the suffering of our children. Please join Melinda and many others who are devoting their lives to make sure there is change for the better.

Bear and Chemo Bag

Guest Blogger: Lee Marchiano


Making The Weak Strong

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

“Even the weak become strong when they are united.”

~ Johann Friedrich Von Schiller

Thank you, Mr. Von Schiller. I agree. Unification, to me, means each individual can bring their own specialty/resource to the group. Unification means strengthening of all our bonds. Most importantly, unification of the childhood cancer community will translate into less suffering and more lives saved.

Oxford Dictionary definition of Unification:

The process of being united or made into a whole

Doctors,hospitals, foundations, please accept this invitation to form a strong fortress of purpose along with this growing list of others.  Peter C. Adamson, M. D., Chairman of Children’s Oncology Group, has since joined this “Dream Team.”

Thomas Jefferson Memorial
Labor Day Weekend with The Truth 365

From The Truth 365 Website

 Arms Wide Open Childhood Cancer Foundation

Awareness Beads

Band of Parents

BASE Camp Children’s Cancer Foundation

Battle For a Cure Foundation

The Brad Kaminsky Foundation

Brooke’s Blossoms

Caleb’s Crusade Against Childhood Cancer

Candlelighters NYC

Children’s Hospital of Philadelphia

Children’s Oncology Group

Ethan Jostad Foundation

Get Well Gaby Foundation

Healing Hunter Foundation

I BACK JACK Foundation

Isabella Santos Foundation

Jessie Rees Foundation: Never Ever Give Up

Kaely’s Kindness Foundation

Kids of Childhood Cancer

Kids v. Cancer

Kyle’s Krew

Melina’s White Light

Memorial Sloan-Kettering Cancer Center

People Against Childhood Cancer – PAC2

Pierce Phillips Charity

Press On to CURE Childhood Cancer

Seattle Children’s Hospital

St. Jude’s Children’s Research Hospital

The Andrew McDonough B+ Foundation

The Coco Foundation

The EVAN Foundation

The Maxwell Lacewell Foundation

The Sierra Rayn Foundation

Tucker Arnold Foundation

United in Grace

Wonder Capes

 More keep adding to the list each day. By uniting all of our “pieces,” we can create a strong, productive “whole.” With The Truth 365 campaign about to begin, this is a brilliant opportunity for the awakening of our communities, our nation, and the world we live in.

Please join in unity.

“Alone we can do so little; together we can do so much.”

~Helen Keller

Could that be a Monument balancing on top of my head, with a car going through it?  Yes, thought so! 

It Takes Two to Speak The Truth

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

“It takes two to speak the truth—one to speak and the other to hear.”

~Henry David Thoreau

September is National Childhood Cancer Awareness Month. This past weekend, I had the opportunity to participate in a project that is bringing together the entire childhood cancer community– a project I believe will change the future of childhood cancer. I remember my oncologist, Dr. Dan, explaining to me how the cure rates for childhood cancer have improved remarkably, because of the sharing of information through Children’s Oncology Group. I have since learned how there are multiple childhood cancer foundations working hard to raise money for pediatric cancer research, many of them started by families whose own child has fought cancer. By taking a stand alongside one another, we can have a larger impact, and make a greater impact faster. By joining together, we can learn and share The Truth.

The project, The Truth 365, seeks to create “One Voice” for all. In creating One Voice, we can “speak the truth,” creating the opportunity for individuals, private corporations, and for our elected representatives to “hear.” With all of my heart, I have hope that our Voice will not bounce off of numb ears and numb hearts. I want each one to accept a bit of responsibility when they “hear.”

The Truth is, childhood cancer research is overlooked and underfunded. The Truth is, childhood cancer researchers must spend many of their working hours applying for grants. I don’t want brilliant pediatric cancer researchers spending their precious time writing grant applications; I want them in the lab, finding causes and cures. Sadly, in the world of pediatric cancer research, this is The Truth. If funding for research is the greatest obstacle standing in the way of ending the suffering of thousands of children, what are we waiting for?

The Truth is, funding for pediatric cancer research is an extreme, high priority for us as individuals, as a country, and as a world. Let’s stand together for action now. Time is of the essence. Children are dying… seven each day in the United States alone.

This is a pledge to our children of today and a promise to children of the future. We are looking into the face of greatness here– greatness in the form of ending human suffering.

That is, our Baby Humans.

                                                                        Photo/Image by Mike Gillette



Please Sir, May I Have Some More?

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

“It gives me great pleasure to announce the formation of The Children’s Oncology Group Foundation. The COG Foundation will be able to directly receive philanthropic funds from both individual supporters and organizations.  One key advantage of the Foundation is that it enables COG’s leadership, comprised of a multidisciplinary team of doctors, nurses, laboratory scientists and other allied professionals, to direct funds raised for childhood cancer research to the areas of highest need and opportunity. In an era of rapid scientific discovery, this direct link will allow COG to rapidly respond and support research and new discoveries that have the greatest potential to benefit children with cancer.”

                               ~Peter C. Adamson, M.D.

                                 Chair, Children’s Oncology Group



This is great news. I will never forget my doctor, Dr. Dan, explaining to me how the collaboration between medical professionals in The Children’s Oncology Group and their sharing of information from studies has led to saved lives.  I feel the need to repeat Dr. Adamson’s words, “in an era of rapid scientific discovery”!!!

Speaking of “rapid scientific discovery,” did you notice this article from the New York Times about using gene therapy to “train a person’s own immune system to kill cancer cells”? It may be possible that this is the beginning of a whole new way of fighting cancer:

“In essence, the team is using gene therapy to accomplish something that researchers have hoped to do for decades: train a person’s own immune system to kill cancer cells.”


 With all of this encouraging news, I realize that the enormous strides we need to take will require funding for research. It will be next to impossible to achieve adequate funding without raising lots and lots of awareness about childhood cancer. This is why I am thrilled about what has happened with Ellen and The Blanket Fairy! The Blanket Fairy has not given up “Making Some Noise” on The Ellen Show Facebook Page. She has one more message for all of us to share with Ellen:

Please save this photo and then go to Ellen’s page and post the following: 



Ellen PLEASE view this video “Letters To Ellen”. These letters were written to you by kids all over the United States on behalf of the hundreds of thousands of children all around the world. 


Please go to this page and post and share this on your walls and blogs. We need to make more noise to get our mission accomplished! STOP CHILDHOOD cANCER!

The Ellen Show Page: http://www.facebook.com/ellentv?sk=wall&filter=1

At first I thought, gosh, Ellen already did such a kind thing, maybe we should just be grateful and not ask for more.  Suddenly, the image of Oliver Swift dashed through my brain.  He asked timidly, even though he had already been served, “Please sir, may I have some more?”

I hope that Ellen knows we are asking for more because we are grateful. We are asking for more not to fill our own overstuffed bellies, but for the ravaged little ones who cannot ask for help themselves.

For them, we politely ask, “Please Ellen, may the children have some more?”

Remember the Kids Childhood Cancer Awareness

 Ethan’s Army News

Join us for the 3rd Annual Ethan Jostad Softball Tournament this Saturday Sept 17th at the Cal Ripken Fields in White City on Hwy 140. Kristy Cook will be playing on Team Ethan helping the Ethan Jostad Foundation battle Childhood Cancer. Come get her autograph and watch the teams play ball. Food vendors, venue for the kids, fun games, Field Dedication & Balloon realease at Noon. Huge raffle with over 60 items. More details listed at www.ethansarmy.org on the event tab.



Happy New Year, Squeak-Squeak!

Dear Oprah,

I wish Happy New Year to you and your staff. The very first thing I must do in 2011 is to write to you (again—appreciate your patience, letter reader producers.) There are those who wonder why I “waste” my time writing each day to you. Although I know my voice is barely a “Squeak,” I will keep “Squeaking” to help bring awareness and a cure for childhood cancer.

Childhood cancer is devastating beyond what my words here can describe. I understand why it has been overlooked in awareness, funding and research. It is just too hard for people to look. It is too gut-wrenching for people to truly comprehend the suffering of the children and their families. What I have learned is that a cure for childhood cancer is within our reach. CureSearch and Children’s Oncology Group state that with adequate funding, a cure for childhood cancer is within our reach.


Lack of money for research is the MONSTER aiding childhood cancer to continue its destruction.

What I am asking, Oprah, is that you please gather experts on childhood cancer together with those philanthropists who have pledged to give away large portions of their fortunes so that we can begin building an enormous Childhood Cancer War Machine.

How is it that our country has the funds to build war machines that kill, but we won’t build one to save the lives of our dearly loved children? Please help me make 2011 the year that we make childhood cancer run for its life.

Me and my “Squeak” will be checking in with you again tomorrow,

With great hope,


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



Oh What a Gift for the World!

Dear Oprah,

Hi, it’s me again, Melinda. I don’t mean to exasperate your producers by sending letters to you every day; I am part of the 51,000 people- Facebook movement asking you to do a show on childhood cancer. This is our way of expressing the urgency of our heartfelt request for you to give a voice to childhood cancer. I can honestly say that I am not aware of one person who is doing this so that they can have a moment of fame on your show, but rather, because we have seen the devastation and we want to share ways we can lessen it.

Childhood cancer is largely ignored by NCI and the American Cancer Society. They provide very little funding for research in comparison to adult cancers. Children with cancer are being killed by their treatments—we need less toxic treatments now. CureSearch and Children’s Oncology Group say that with adequate funding, a cure is within our reach. Will you please help to gather those wonderful philanthropists who want to make a difference by giving away their fortunes? We can cure childhood cancer by proper funding! Money! What an incredible gift we could share with the children of this world!!! It makes sense to me that finding a cure for childhood cancer would also help adults with cancer.

Let’s gather the people who care.

Let’s raise the funds.

Let’s strangle childhood cancer until there is no life left in it.

Oh what a gift for the world.

Let’s do it.

With utmost sincerity,


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

My Christmas Day Letter to Oprah


My Christmas Day Letter to Oprah…

Dear Oprah,

My name is Melinda Marchiano and I am sixteen years old. When I was thirteen, I was diagnosed with Hodgkin lymphoma. Today, I am in remission and working hard to stop childhood cancer—yes, I am writing to you on Christmas Day. If I could open my heart for you to look inside, what you would see is a whole ton of gratitude. It is this gratitude inside me that drives me to become a voice for children who cannot speak for themselves.

Oprah, CureSearch and Children’s Oncology Group state that with adequate funding, a cure is within our reach.  I believe them. What you could do, by giving a voice to childhood cancer, is astronomical in scope. When children are diagnosed with cancer, 80% are at advanced stages—compared to 20% in adults. I cannot sit silently with my “cure” and allow my fellow young cancer patients to continue their battles without fighting with everything I have for their cure too. Just by raising awareness, we can all make a difference. Today is the day to begin to stop the suffering. We need awareness. We need funds for research. We need a cure. Today.

As I looked around the table today at all of my family at our Christmas feast, I could not have been more thankful. At the same time, I will admit that thoughts of the Nunn family… who lost their seven year-old son Max this past Thanksgiving Day to brain cancer…danced through my heart all day long.

Please Oprah, please do a show on childhood cancer,


Waiting to hear from Make-A-Wish

I haven’t heard a word from Make-A-Wish… not even one word. I have decided I won’t analyze things, or stress about what this means or doesn’t mean. What is meant to happen will happen. Okay, I will admit that I am a teeeeeeeeeensy weeeeeeeensy bit encouraged because I did not receive an immediate, “NO!!!!!!!!!!!!!!” As each day goes by, I also admit that I imagine myself as a fly on the wall at HARPO Studios as Oprah’s producers scratch their heads and nod at one another in agreement that a show on childhood cancer would be AMAZING!

Okay… imagination is rolling…

After a information-filled Oprah Show that includes CureSearch, Children’s Oncology Group, St. Baldrick’s, and so much more, then Oprah can announce a great big surprise! Oh my gosh, I can see it now– I can really see it!

Oprah announces that her Angel Network is going to build the BIGGEST, BADDEST (yes, BADDEST!) most utterly powerful Childhood Cancer War Machine ever imagined by humankind! She tells her audience how her heart has been moved to make a huge difference in the lives of children with cancer in our country and throughout the world. Oprah goes on to tell all of us how material things are “of this world,” but helping find a cure for childhood cancer is permanent, lasting, and the most worthwhile of all of her missions here on Earth.

It is, in fact, the mission of a true angel. I am still wishing, still hoping, still praying… for Oprah to be the Angel I am seeking.

Oprah Please Do A Show On Childhood Cancer - Our Kids Need Your Help

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