A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

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!

 

 

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Hero Braden

 
 

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

Dear Oprah,

Today, in my daily letter, I want to tell you about one of my heroes. His name is Braden Hofen and he is six years old. Over three years ago, on Halloween night, Braden’s mom and dad took him to the hospital. Although he was ready for Trick-or-Treating, dressed as Woody along with his brother, Zach, as Buzz, he was crying and didn’t feel well. His parents thought the problem might be his asthma. After a chest X-ray revealed a small gray shadow, the medical staff sent Braden home the next day, with iron drops. They believed Braden’s problem was an enlarged liver due to a virus and lack of iron. His parents were vigilant in following up on his problems with doctors, yet they faced doubt with their calls and questions– until they returned to the ER in December. The new X-ray revealed a mass that was pushing Braden’s small organs. The mass was stage 4 neuroblastoma. Doctors missed Braden’s diagnosis in October—this meant Braden’s cancer secretly advanced. The Hofens do not blame doctors for this.

Want to hear something that will give you chills?

That same Halloween, my mom took me to a specialist (after months of doctor visits to search for what was wrong with me) who examined me and told us I did not have cancer. After “vigilant follow-up,” like the Hofens, my cancer was discovered a couple months later– the same December as Braden’s.

This story of missed diagnosis repeats itself over and over.

We need awareness.

We need funding for research

We need less-toxic, targeted therapies that cure without leaving life-long devastating effects

My six –year old buddy, Braden, has inspired thousands of people to join together to speak for children with cancer and work for change. How can we, when we see this sweet boy just wanting to be a boy, not do all we can to see that he and others have HOPE?

Braden is fighting for his life.

Please help open the floodgates of care and compassion by doing a show on childhood cancer.

My thanks,

Melinda

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

 
 

Hero Braden!

 

 

 

 

 

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Building The Childhood Cancer War Machine

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

Dear Oprah,

Persistent in my mission, I write to you again today with great hope you will make the choice to do a show on childhood cancer. Childhood cancer is grossly overlooked and underfunded; our society is virtually clueless about childhood cancer. Our knowledge beyond, “Oh yeah, it’s the bald kids and St. Jude’s,” is glaringly absent. What this group of over 52,000 people is asking you to do is to produce a show that will educate your enormous audience about childhood cancer.

It seems to me that those who are doing the most to stop childhood cancer are the people who have been torn, beaten and ravaged by it. They know the seriousness… when children are diagnosed, 80% have advanced stages of the disease, compared to 20% in adults. Late effects from harsh cancer treatments are common, causing lifelong health problems for over 40% of childhood cancer survivors. Some types of childhood cancer have a 0% survival rate.

We, as a society, have far, far, to go in implementing a healthcare system that will detect cancer earlier in children. There is a glimmer of hope on the horizon– with the announcement last week about Johnson & Johnson developing a new blood test that they say can detect cancer cells. What a giant step forward this could be for earlier detection of cancer in children!

Please do a show that educates our citizens about childhood cancer by inviting childhood cancer experts to explain truths. Please invite others with huge hearts and huge wallets to join them. Please begin the process of assembling the most powerful Childhood Cancer War Machine possible. With adequate funding for research, a cure is within our reach.

I can’t help taking this one step further… this fact is unnerving…

The causes of childhood cancer are largely unknown.

We need brilliant-minded scientists/researchers to operate this Childhood Cancer War Machine so they can locate the cause and finally rip childhood cancer out by the root!

Hoping and praying,

Melinda

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

 

Therapy Dog Echo Helping me through chemo

 

 

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Invisible Terrorist

 
 

Dear Oprah,

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

My daily letters to you continue, and my appreciation for your consideration of my request grows with each message I send. By now, your producers have to be wondering how I can possibly feel this strongly about wanting you to do a show on childhood cancer. This does not have to be a show of despair; this can be a show of courage and hope.

Knowing how little attention and funding go toward childhood cancer research makes me want to leap on top of the Empire State Building and start squawking at the top of my lungs until throngs of people look up to notice! This may seem a bit extreme, but I need to illustrate an important point. Each school day, 46 children are diagnosed with cancer in the U.S. This means that nearly one child in each state on each school day hears the words, “You have cancer.”

For me, this means war. There is an Invisible Terrorist kidnapping and torturing children. The terrorist’s name is childhood cancer. We never know where or when this Invisible Terrorist will attack. I don’t understand why our country has billions of dollars to spend for the War on Terror, but not enough money to fund research so that we can end the evil reign of childhood cancer.

Please gather childhood cancer experts and members of The Giving Pledge. Let’s do this for the courageous children who are battling cancer as I type these words. Let’s do it for all of the families who have holes in their hearts. Let’s do this because it is the right thing to do for humanity.

Oprah, the children are so very precious.

Let’s help them,

Melinda

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

Karl Page 4 Years Old and Completing 3 Years of Chemo on Wednesday

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Let’s Wake Up The World

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

Dear Oprah,

It’s not just me who would pour “Guts on the Table” before you if it meant you would shine your light on childhood cancer with an awareness show. I believe each and every one of the 52,000 people who have clicked “Like” on our Facebook page feels just as I do.

At sixteen years old, I try to make sense of this world that we live in. I look at what our society feels is important and I cringe… wealth, fame, and “getting something for nothing” seem to be our highest aspirations. What I see, and what the 52,000 people see, are children who are suffering and dying from cancer. The suffering spreads into all areas of their lives:

*I see a teenage girl getting her beanie pulled off her bald head so that others can ridicule her.

*I see a boy named Ethan Jostad enduring the pain of a classmate telling him she is “glad” he has cancer.

*I see mothers and fathers watching helplessly as their child writhes in pain.

*I see families emotionally and financially destroyed.

*I see a mother who took her life because the pain from watching her suffering child became just too much for her to take.

*I see hundreds of children whose lives could have been saved by earlier detection through greater awareness.

This show on childhood cancer can be a huge Wake-Up-Call for kindness and gratitude. Imagine teaching children that good health is something to be extremely grateful for… imagine challenging them to express their gratitude for life by helping others in need. Imagine spurring the youth of our world to give from their hearts. What if… what if we challenge our youth to raise money for childhood cancer research? What if we teach them that the next childhood cancer diagnosis could be their own?

Surely there would be action and surely our priorities would reassemble into a much more compassionate listing.

Let’s Wake-up-the World,

Melinda

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

  

 

 

Brave Cancer Warrior Ethan Jostad

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Wow, This Girl Really Means It!

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

Dear Oprah,

My name is Melinda Marchiano, and I am 16 years old. I will admit right up front in this message that I am desperate for you to bring attention to a cause– childhood cancer. Childhood cancer is the #1 disease killer of children, and I discovered– at 13 years old– what it is like to fight cancer. The reason for my desperation is not because I need or want anything for myself, but because I need you to make the choice to give childhood cancer a Voice.

Childhood cancer is overlooked, underfunded, and grossly misunderstood. The NCI and American Cancer Society give little of their time or resources to childhood cancer. The eleven drugs used today to treat children with cancer were all developed before the 1970’s; we absolutely must develop new targeted treatments that cure, yet are far less toxic (for example antineoplastins and oncolytic virotherapy.) With the research tools that are widely available now, enormous strides toward this goal are highly possible—with adequate funding for research.

By now, your producers must be shaking their heads, thinking, “Wow, this girl really means it.” I wonder what the thought is that comes after that. Is it, “What are we going to do about this?” Or, is it, “Wow, is she ever dreaming?”

I have people posting on my Facebook wall, telling me that writing to you is a “Big waste of time.” Even if your answer is no, I do not view writing to you as a waste of time. I truly believe there is goodness in you that will cause you to open your heart to this passionate plea. I have to try. Do you know why?

Children are suffering.

Children are dying.

Here is the thing; it does not have to be this way!

Let’s round up The Giving Pledge with childhood cancer experts to create an everlasting Pledge for a Safe Cure for all Children with Cancer.

We can do this. Let’s do it.

Now.

Not giving up hope,

Melinda

A seven year-old boy named Max Nunn taught me about advocating and raising money for childhood cancer research. Max said, “I mean it!” Thanks Max for still teaching me– all the way from heaven.

Thank you for your lessons, Max!

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

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Treasures in Heaven

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

Dear Oprah,

Thank you for your compassion in reading my daily letters requesting you to do a show on childhood cancer. People keep reminding me that time is running out. Since this is your last season, I know chances are becoming slimmer and slimmer that you will answer positively. Yet, I can’t give up, and I won’t give up.

We, as a society, cannot continue to ignore childhood cancer. There are 40,000 children in the U.S. battling cancer today. We are more interested in the lives of the rich and famous and badly behaved people of the world than in turning our attention to fight for the most vulnerable, our seriously ill children.

This is just wrong.

I love this verse:

“Do not store up for yourselves treasures on Earth, where moth and rust destroy and where thieves break in and steal. But, store up for yourselves treasures in heaven, where moth and rust do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.” Matthew 6:19

Imagine the Treasure we could leave here on this Earth. I imagine a large table (like Mr. Trump in The Apprentice,) with childhood cancer experts and members of The Giving Pledge gathered for a Pow-Wow about building the Childhood Cancer War Machine that will decimate childhood cancer. I see their faces: Dr. L. Hartwell, Dr. E. Kleinerman, Dr. Bruzynski, Dr. P. Adamson, Dr. J. Schiffman, Dr. Curran, CureSearch, St. Baldrick’s, PAC2, Kids V Cancer, Members of the Pediatric Cancer Caucus, and interspersed with them, The Giving Pledge members: Mr. and Mrs. Case, Mr. and Mrs. Gates, Mr. Zuckerberg, Mr. Icahn, Mr. Milken, and all others.

At the end of this show, I see a gigantic celebration of the beginning of change… streamers, balloons, and confetti streaming from the sky while tears stream down audience members’ faces. We cannot wait another day to act in a huge way to cure childhood cancer. Children are a treasure here on Earth.

I cannot imagine a greater Treasure for Heaven than ending their suffering.

Grateful for your care,

 Melinda 

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

 

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Persistence in the Mission of Hope

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

Dear Oprah,

It is me, Melinda again, writing to ask you to please do a show on childhood cancer. The purpose of my daily letters is not to annoy you, but to engage you in my mission of hope. If you look at the Oprah, Please Do a Show on Childhood Cancer Facebook page today, you will see many stories of children who have fought cancer, along with shocking statistics of how childhood cancer is overlooked and underfunded.

If you look closely at the stories, you will find many common threads. One very startling thread is the common denominator of children with cancer being misdiagnosed. It is appalling that parents take their children to appointment after appointment, doctor after doctor, and still, their child’s cancer is not found until it spreads to the point of no hope for recovery. I do not blame doctors for this. This is a problem in our society. There is so little awareness that children are dying as a result.

Over the past year, I have been blessed, and at the same time saddened, by communications with other children with cancer. They fight so hard. They just want to be normal. Their families are ravaged and devastated. Unfortunately, children do not vote, children do not earn income, and children do not have the same rights as adults. How can children fight for the same “Cancer Rights” that adults have earned?

They can’t.

These children are depending on us. Future children are depending on us. Please gather childhood cancer experts with members of The Giving Pledge for the purpose of creating an enormous Childhood Cancer War Machine.

This spectacular machine would guarantee:

*Earlier detection for childhood cancers

*Less toxic treatments for childhood cancers

*Great follow-up care for children with cancer

I want this with all of my heart. I will persist. Yes, I will keep persisting until I engage you in this mission.

With great hope,

Melinda

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

Last Chemo Day at Cottage Hospital

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The Magic Wand

 

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

Dear Oprah,

It’s me, Melinda again, with Part II of my “Squeak-Squeak”2011 New Year Letter to you.  I am inspired, motivated, and thankful to be a soldier in the passionate Facebook army of over 51,000 people who are asking you to do a show on childhood cancer.  Suddenly, my “Squeak” is multiplied many times over, with others writing letters to you daily. This is our way of demonstrating the immediate need for action. We are calling upon you because we believe you are the person who will be caring, willing, and able to accomplish the monumental task of gathering together the building blocks of a Childhood Cancer War Machine.

Instead of allowing space to quote statistics today, I will use all of the space to speak straight from my heart. I did not “decide” to become a soldier in this army. This mission chose me; there is no way I can turn my back on the children who are suffering. When I think about the children who will have to suffer in the future if we do not act now, I cannot sleep; I cannot breathe. Not only do we need to act now, but we need to act in a HUGE way!

In addition to being a soldier in the Facebook movement and army to help children with cancer, I am a full-time soldier in God’s army. My cancer story– my life story– is a story of faith, and my faith guides me, leads me, and challenges me to do what God has placed before me to do.

What He has asked me to do is to help His sick and suffering children.

Oprah, I need your help. Just itty-bitty Melinda cannot do this alone. Please gather together childhood cancer experts with members of The Giving Pledge. Make something amazing and magical happen! You hold the “Magic Wand” in your hands.

Please wave your Magic Wand over Childhood Cancer.

I believe in your magic,

Melinda

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

Getting Ready for a PET Scan

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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,

Melinda

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

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