A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Lives That Matter

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

Dear Oprah,

With 52,000 people sending letters to you daily, asking for a show on childhood cancer, I imagine that you must be Statistic-ed to a pulp by now. I have no doubt that our group has succeeded in informing you of how overlooked and underfunded childhood cancer really is. I have nothing left but to appeal to your heart.

I know a boy who battled cancer for years. He lost one of his legs. All of his teeth rotted out of his mouth from years of chemotherapy. By the time he turned eighteen, he could not take the pain any longer. He ended his own life.

I know a seven year-old boy who died on Thanksgiving Day in his mom and dad’s arms. He had fought brain cancer… and at the same time, he inspired thousands of others to give to pediatric cancer research.

These are real children with lives that matter.

Our society is ignoring these children. We look off to the horizon, rather than noticing the suffering at our very own feet.  I love that our nation has money to send to far-off lands when there are global disasters.  I would like to add that childhood cancer is a national and global crisis that requires our equal attention.

Please help bring attention to the global crisis of childhood cancer,

Melinda

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

Little Angels-- Lives That Matter

 

 

 

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Word Are Just Words

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

Dear Oprah,

By now, your producers must be befuddled as to why I keep writing each day to ask you to do a show on childhood cancer. Words are just words. Words cannot do anything for children who need our help. Words can’t do anything to bring back children who have died. Words won’t stop children from being diagnosed with cancer.

Words are just words.

If my words could take the form of my feelings, then my words could open the heavens. God’s healing Hands would reach down to instantly heal each of His hurting children. I wish, I wish, that life here worked that way.

Since it doesn’t, I will continue putting together words…  I pray for the words that will reach out and touch your heart. I pray for the words coming from the mouths of those tiniest ones who have never known anything but pain. I pray for the words coming from the mouths of the brave, courageous children who suffer silently, with gentle smiles to let others around them know that everything will be okay. I pray for the words from the parents and siblings who have lost the loves of their lives.

I pray for the words that will bring rescue.  

Please help bring awareness… this will lead to funding for research… which will lead to a cure.

It’s true that words are just words– what I am really typing are feelings from deep in my heart.

Please toss a life-preserver to childhood cancer,

Melinda

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

Sweet Baby Girl... Children depending on us to help them

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Courage Despite Grief

 

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

Dear Oprah,

In my daily letter on this day, I ask you once again to please do a show on childhood cancer. I have read each of the stories posted on the Oprah, Please Do A Show On Childhood Cancer Facebook page since it was born in early September last year. I don’t know how anyone can read the stories and not take action in some way. It seems our society has become lazy, self-centered, and selfish. We wait for others to do what we can do ourselves. We busily pursue our own agendas… turning away from those who desperately need our help.

I know people who have not turned away from the daunting challenge of working toward a cure for childhood cancer. These people are the opposite of lazy, the opposite of selfish. The people I am speaking of are heroes to children with cancer—they are parents who have lost their own child to cancer and still fight on for others. They have created organizations that raise money for research and also help families through the financial/emotional struggles of childhood cancer. I would LOVE to see you feature these heroes on your show. Funny, after I wrote that last sentence, I heard a voice telling me what these heroes would say in response.

They would say that their heroes are the children fighting cancer.

The truth is, Oprah, children fighting cancer need tons of support—medically, physically, emotionally, and spiritually. I don’t know what we would do without the individuals who have created Layla Grace Foundation, People Against Childhood Cancer, Alexa Nawrocki  Pediatric Cancer Foundation, Alex’s Lemonade Stand, Kids V Cancer, Children’s Cancer Association,  Bear Necessities Pediatric Cancer Foundation, and I know there are more. I cannot express how much I admire these people, not only for what they are doing for children with cancer, but for their courage in taking huge leaps to assist children with cancer in the midst of their grief.

Courage.

Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow. ~Mary Anne Radmacher

 Be back again tomorrow,

Melinda

 

AJ and his Dad, Bob... one of my heroes

 

 

 

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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!

 

 

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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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Guts On The Table

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

Dear Oprah,

 Hi, it’s Melinda again. When I returned to school after treatment ended, it was rough.

From Grace:

Another event happened at school, although this one was less than fortunate. People were mean. Several run-ins with students began to affect me, scar me. One kid in my Biology class upset me so greatly that I cried the whole way home. From previous inquiries about my absences he knew that I had fought cancer.

 One day, when I returned after missing multiple classes, he questioned me. “Where have you been? Sick?”

 I nodded.

 “Man! I wish I could just go home all the time!

 Those words ignited a fire inside of me. I was furious.

 “No you don’t,” I said, remaining calm despite my anger.

 “Yeah, I do; that must be nice,” he shot back.

 I remained stubborn. “Trust me, you don’t,” I insisted before turning a cold shoulder to him.

 Words screamed in my head.

 “You @#*&! If only you knew how much I suffered, and how much I would love to be able to make it through even one day without feeling like crud! And don’t you think for one second that I use my illness to get out of school! I would kill to be able to come to school! I’m sitting here right now, feeling like %#@*! Maybe if I puke in your face you’ll believe that I am sick! You stay home with a cold! A cold! I had cancer . . . . *#@ cancer! You get to feel good! You get to be healthy! I would give anything, anything, to feel that way for one millisecond. I would pour my guts out on this table right now, just to know what it feels like. I don’t even *&#@ remember what it feels like!”

 Tears welled up in my eyes. I couldn’t focus, and my rage blurred every word that Mr. Ritchie spoke. I just wanted people to believe me . . . that’s all. (Copyright Grace: A Child’s Intimate Journey Through Cancer and Recovery)

 “Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.”    —Maya Angelou

 Please believe me when I say I would pour my guts out on the table before you, if it meant you would shine your light on childhood cancer. Awareness=Funding=Research=Cure!

Melinda

Max Clearly Stating His Feelings About Cancer

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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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