A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Oprah’

Childhood Cancer Advocacy Momentum — Connect Connect Connect

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My name is Lee, and I am Melinda’s mom. As a college sophomore, Melinda has responsibilities that make time for blogging difficult. Sleep is a rarity. The world of childhood cancer still goes on, which means this blog about childhood cancer needs to continue. Melinda has invited me to be her guest blogger until Pepperdine lets out for the summer.

Since the time of her treatment, six years ago now, we have worked together as a “team” to help children with cancer. Having a strong focus to help others was instrumental in Melinda’s physical and emotional recovery from cancer, and I have no doubt it has helped me as well. There is something indescribable about helping others when your very own self is falling apart. Isn’t it true we feel as humans that we need to have our act together before we can help anyone else; we need to have all of our “ducks in a row” before we have “extra” to output for others. The plain truth is, we are often more compassionate, more understanding, and more helpful when we are broken, mangled, or bent. Any parent whose child has fought childhood cancer falls into this broken, mangled, or bent category. I am no different. My heart will never recover from the terror of Melinda’s suffering. But… I will rejoice every moment of every day for the rest of my life that she has come through the suffering. I intend to take this mangled heart of mine and form its love into a huge, fierce fire– a fire that will light the world of childhood cancer.

The childhood cancer community is a community no one chooses or dreams of joining. We are “drafted.” Not long after I was drafted, I realized I needed to “Enlist.” My love for children is so deep, so great, so overflowing, that I have no choice but to help these children in every way I can. I will admit there are kid parts of me that have never grown up. I have been known– on many occasions– to randomly and suddenly break into a skip. This is just one thing I love about kids; they teach us joy. They teach us about what we have discarded and left behind in our adult lives. When that adult reserve kicks in and tells me not to skip next time, I plan on inviting it to join me!

I want to express my thanks to moms and dads in the childhood cancer community for sharing your daily lives through social media. I feel I know so many of you, just from following. You have given me a better understanding of the problems, pressures, and battles you face each moment of each day. I want you to know how much I care. I want you to know how hard I will work for change. I want you to know you are not alone.

Finally, I am excited about the momentum that is building. I am honored to know many of you who work your tails off so that there can be newly funded research for less toxic treatments. I am amazed by the courage of so many of you who have lost your children to cancer that now run foundations to help the kids. After five years of my personal advocacy, it’s clear to me that the tides are beginning to turn. Four years ago, a dear lady named Christine began a campaign intended to raise awareness of childhood cancer. She was inspired by her friend, Deliece Hofen and her son, Braden, who is currently undergoing a bone marrow transplant. The campaign aimed at getting Oprah’s attention for a segment on her show and was called, “Oprah, Please Do A Show On Childhood Cancer.” Within no time, the childhood cancer community came together with a loud voice. Unfortunately, Oprah did not answer our pleas to help raise awareness. She had never done a show about childhood cancer and never did one before the show went off the air.

Recently, the outcome of our cohesiveness did bring about something extraordinary. “Under intense pressure” from social media and grassroots, Josh Hardy was able to get the medicine he needed, but had been denied. Another beacon of hope for progress is the Gabriella Miller Kids First Research Act. Because we are connected and engaged with each other in our community, we are beginning to achieve some success. This means we have opportunities to save kid’s lives! This means we can build even more momentum for avenues of change.

Josh Hardy

http://video.foxnews.com/v/3329179339001/7-year-old-cancer-patient-receives-new-drug/#sp=show-clips

The Gabriella Miller Kids First Research Act

http://www.foxnews.com/politics/2014/03/11/congress-passes-bill-to-support-childhood-cancer-research/

Yes, let’s connect, connect, connect so we can achieve as much as we possibly can. Childhood cancer is the #1 cause of death by disease in our country. Seven children die from cancer every day here in the United States and over 40,000 children are currently in treatment. Many of these children fight for years. Many of these children suffer even more from the effects of their treatment than they do from cancer.

To all my fellow onc-parents, I love you and your children.

“Charge!!!!”

Please leave your contact on this page so we can all connect.

Facebook: https://www.facebook.com/pages/Grace-A-Childs-Intimate-Journey-Through-Cancer-and-Recovery/149423578414076?ref=hl

Twitter: https://twitter.com/1ballerina

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Oprah’s Last Call

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

I received a message on Facebook today from a lovely lady named Suzie, and she told me about Oprah’s “Last Call.”

Suzie… you know I had to… thanks for informing me:)

Dear Oprah,

I do have a dream.

What I dream of is an end to childhood cancer. While I recognize that there is no way to accomplish this in one show, my heart searches for the words to explain to you the enormous impact you could have in the lives of children and their families for years to come. The impact from this one show would be felt throughout the world, throughout time.

My dream begins with “HARPO-Hook-Up” bringing together a team of experts on childhood cancer to educate your audience.

Some daunting facts: childhood cancer is the #1 cause of death by disease for children in our country. When children are diagnosed with cancer, 80% are at advanced stages, compared with 20% in adults. The National Cancer Institute and the American Cancer Society appropriate a tiny portion of their budgets for childhood cancers. For children who survive, 2/3 will face serious health consequences as a result of their treatment. For some children, surviving cancer treatment is just the beginning of a new nightmare. Many families are left emotionally and financially devastated.

What I dream of is awareness. What I dream of is an assembly of passionate people– outrageously intelligent scientists, brilliant doctors, and childhood cancer organization personnel who will speak together at a big table (yes, like Mr. Trump’s big table!)

What I dream of is a huge surprise for the doctors, scientists and children…BIG funding for a cure. Awareness is the huge beginning obstacle, but what needs to follow to make my dream a reality is a large donation of money for childhood cancer research. The biggest and best surprise of all would be adequate funding to build the BIGGEST & BADDEST Childhood Cancer War Machine ever built. We do not have a day to waste. There are 40,000 children fighting cancer in the United States this moment.

My dream is to win the war against childhood cancer.

Please Oprah… let’s fire up the Tank and start blasting.

Hope!

 

Messengers From God

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

If we have nothing to give, what have we got?

Nothing.

My letters to Oprah have ended, but the floodgates inside me have opened. I know this is just the beginning of the feelings that have begun gushing out. Even after writing all of those letters, I feel that I have just started to say everything that people need to know about childhood cancer. Most of all, I want people to feel what I am writing.

I have no doubt there are those who are thinking, “Melinda, Melinda, chill out, will ya???? Why the heck don’t you just take a chill-pill and stick to dancing?”

If you knew the children, you would do exactly what I am doing.

If you knew the children, you would be so fired up to help them that elephants couldn’t hold you back.

If you knew even one of these cancer-fighting-warrior-children, you would know instantly the purity of their beings. You would know that their suffering must be for some greater purpose.

Could that greater purpose be to make us kinder, gentler, more compassionate humans?

What greater expression of kindness and compassion can there be for these little ones, than finding a cure that will end their suffering?

I have no doubt these children are Messengers of God.

"Messenger" Kristy Meeks

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

Golden Canisters of Hope

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

Dear Oprah,

As I write this, nine Golden Canisters of Hope are on their way to you and your producers. There are over 50,000 people hoping, praying, and waiting for your response. Please let your answer be, “Yes!”

Please Oprah, do a show on childhood cancer.

You would think that if children were suffering anywhere, there would be brigades of rescuers who would show up. Yet, the smallest, most vulnerable of our world do not receive this blessing. The naked, ugly truth about childhood cancer is that it is virtually ignored.

I have been “Tapped.” Have you ever felt that God has called you to a mission? You see, I have this gratitude for my life that bubbles over… lives are precious, precious, precious… the love we have been given to share is everything. With this great gift and blessing of my life comes responsibility.  

God has spoken to me, “Show me Melinda. Show me your gratitude.”

There is no greater way for me to show Him how Great He is, and how grateful I am, than to do what He has put before me to help children with cancer.  Although this is my last letter to you, I will continue to do what is before me with ever-growing passion.

I guess that when you answer the nine Golden Canisters of Hope, this will be the same answer for my Make-A-Wish. Yes, the girl who wished for you to do a show on childhood cancer is me.

Once more, I am not asking to be on the show. I will admit that it would be thrilling beyond my wildest dreams to sit in your audience and watch this show happen. Please give me a bit of notice if you respond positively… I will need to find a sponsor… Kleenex!

Farewell,

Melinda

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

 

Golden Canisters of Hope on their way to HARPO Studios

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

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!

 

 

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

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

Like No One Else…

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

Dear Oprah,

I absolutely love how you have taught your audience, over the years, how to live their “best lives.” Although I am only sixteen years old, I have emerged from an experience that has clearly illustrated to me how I am to live my “best life.” That experience was battling Hodgkin lymphoma when I was thirteen, and I am living my best life by pouring my heart and soul into helping other children with cancer.

Did you know?

Childhood cancer is the #1 disease killing children.

Every school day, 46 children in the U.S. are diagnosed with cancer– 12,500 children each year.

One out of every five children diagnosed with cancer will die; in some forms of childhood cancer, one out of every five children will live.

The causes of most childhood cancers are unknown and cannot be prevented.

When children are diagnosed with cancer, 80% have advanced stages of the disease, compared with 20% of adults.

One of my favorite words is “gelatinous.”  (Just making sure you are paying attention!)

 There are 40,000 children in the United States battling cancer as I write this.

Will you please, please, Oprah, shine your light on childhood cancer?  If you would open your heart to this request, childhood cancer would suffer a serious blow to its cruel and evil existence. Like no one else, you can bring awareness to childhood cancer. Like no one else, you can help begin the process of driving childhood cancer to extinction.

Like no one else, you can…

Will you?

Please?

Melinda

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

Nurse Cyndi, the Blue Chemo Fairy

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,

Melinda

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