A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘childhood cancer’

Literacy, Advocacy, Awareness, Accountability

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

I received some excellent news today from the United Way of San Luis Obispo County. My program, “Literacy and Advocacy Youth Challenge” has been selected to receive a 2011 Youth Board Grant! I am really, really, really excited about this because it means I will have many opportunities to share with students.

What I proposed for my program is to place five copies of Grace: A Child’s Intimate Journey Through Cancer and Recovery in twenty schools throughout San Luis Obispo County, and also speak with the students. For the very first time, students will learn from a survivor what childhood cancer really is. Kids love the world of fantasy— Lord of the Rings and Harry Potter for example. I believe it’s good for children to also get a dose of some harsh reality of life as well so that they are able to become compassionate individuals. I know that many will be shocked by the harsh reality that a child can get cancer and shocked by the harsh reality of what treatment is like.

Notice the word “Challenge” in my title? Yep, I plan to hold a bar as high as I can in front of them and challenge them to use everything they have been given to reach it. I want them to know that fourteen year-olds (and younger) can write books.

“Gosh, if she can do it, I can too!”

Perhaps even more than motivating them to write, I want to challenge them to become an advocate of something. You know very well that I will use this opportunity to tell every student I speak to about childhood cancer and why I am passionate about raising awareness and finding a cure. I will leave it up to each individual to look within themselves for what cause moves their heart to action.

And guess what?

Part of my program is accountability.

The students will be reporting back to me about the actions they have taken as a result of my challenge.

Literacy, Advocacy, Awareness, Accountability… sounds great to me, and I am excited to get started!

With my sincere thanks to United Way of San Luis Obispo County!

Still Rejoicing in Braden's Miracle!

 

Prayers for Breanna and Crista. Praising God for miracles!

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Who is Coming to the Rescue?

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

When a disaster strikes, The Red Cross and other emergency services come to the aid of the victims of the disaster… regardless of where that disaster occurs in the world. This is the appropriate response when we see fellow humans suffering from unexpected catastrophes. How can we, as compassionate humans, stand on the sidelines and do nothing?

What would happen if our society truly understood the catastrophe of childhood cancer? What would happen if all of us could not turn away from the truth, the facts? What would happen if those with decision- making power in the media decided it was time to report about the Monster killing our children?

Awareness. That is what would happen. Awareness.

I am wondering if I need to get out that triple beam balance I spoke of a few days ago– you know– the one I was joking about whacking someone over the head with in Chemistry?

There are people who are “in the trenches” of the childhood cancer battlefield every single day. These people did not choose to be in the club they belong to. They didn’t have to get whacked over the head with a triple beam balance to leap into action. These are people who have lost their child to cancer, and they vow to make a difference so that other children do not have to suffer like their own child did.

These people amaze me. They inspire me. They blow my ever-loving mind. They open my heart.

How do they go on after losing their child to cancer? How do they turn all of that grief into HOPE for others? How is it that those who have suffered through the catastrophe are the ones who are showing up to help others at future disasters?

Can you imagine the world if the only people who showed up to help when a disaster strikes are people who have been through the same disaster?

It is time, right now, for each and every single one of us to join in the battle against childhood cancer. Don’t make our wounded warriors also be the lone rescuers. Please act.

Today, I give you two options. Bob Piniewski and Jodie Nunn are both shaving their heads to raise money for St. Baldrick’s. Please consider a donation to their efforts. Bob and Jodie are “Wounded Warriors” motivating me to do all I can.

“Do not merely listen to the word, and so deceive yourselves. Do what it says. Anyone who listens to the word but does not do what it says is like someone who looks at his face in a mirror and, after looking at himself, goes away and immediately forgets what he looks like. But whoever looks intently into the perfect law that gives freedom, and continues in it—not forgetting what they have heard, but doing it—they will be blessed in what they do.”

James 1:22-25

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Jodie Nunn will shave her head to raise money for St. Baldrick's. Would you like to donate in memory of Max?

Please continue your prayers for Breanna and for Crista…

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Once You Choose Hope, Anything is Possible

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

Have you ever prayed for a miracle?

Have you ever prayed for a miracle and then, one day, saw that miracle come true?

For me, today is that day.

The miracle is Braden.

I have written before of one of my heroes, Braden Hofen. Braden is six. I just learned the results of his latest scans after treatment for recurring neuroblastoma.

NO EVIDENCE OF DISEASE!

NO EVIDENCE OF DISEASE!

NO EVIDENCE OF DISEASE!

I am so thankful I had to type it three times, and I can only imagine what his family must be feeling!!!!!!!!!!  Besides giving thanks for the great news about Braden’s health, I am also giving thanks for the hundreds of people who have been praying for him. I am giving thanks for all of the people who have supported Braden and the Hofen family in every way—big and small.

I just hung up the phone from talking with Jonny Imerman of Imerman Angels. Guess who is their newest “Angel”? These “Angels” are “matched,” and they give support to patients going through similar cancer experiences. I absolutely love this! What a great idea, what a great organization, and what a blessing it was to speak with Jonny… no doubt he is a Real Angel. If you know someone going through cancer who could use support from someone who has already gone down the same path (is there a cancer patient who couldn’t use this?) this is the place to refer them!

While I am rejoicing in the miraculous news with everyone who loves and cares about Braden, my heart is, at the same time, heavy with the news today about a friend I have written of before, Breanna. She is fighting very, very hard, and at this time, is unresponsive. Her mom reports that her vital signs are strong. Please pray for Breanna. Please pray those same miracle prayers we have all prayed for Braden.

Let’s multiply miracles.

“Once You Choose Hope, Anything is Possible”

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

Miracle Messenger, Braden Hofen, HOPE!

 

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I Think I Changed ‘Em

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

It was an average day in Chemistry, a worksheet here, an activity there. I sat at the lab bench munching on Double Bubble. I was determined to find out the percent composition of sugar in gum. My lab partner and friend, Carolina, sat quietly beside me chomping her gum too. We were listening to the conversation of two guys sitting across the table from us. I had heard it before. Cancer… they were talking about cancer.

The lighthearted way it rolled off their tongues began to irritate me slightly.

It was not until they began joking about it that I began to ask myself, “I wonder if I should tell them?”

The thought barely entered my mind before the words were coming out of my mouth.

In the utmost matter of fact manner, I stated, “Actually, I had cancer.”

Their immature faces dropped and landed in a twisted heap on the linoleum floor. With their mouths slightly agape, their expressions displayed a complex mix of thoughts encased in shock. The naïve chatter had transformed into complete silence. I could have wacked them over the head with a triple beam balance and it would not have surprised them more.

Unable to form grammatically correct sentences, the occasional, “Oh, really,” “Um,” “ Ahh,” escaped them.

Although they assumed it was a sensitive subject to me, I was secretly in hysterics on the inside.

Their faces remained in a state of disbelief. Their minds tried to grasp the fact that a kid could get cancer, survive it, and look like I do.

Hello, welcome to reality… yeah…. Kids get cancer too…

On my way back to my desk, I saw them whispering to each other and discreetly glancing at me. They didn’t look at me the same way.

I think I changed ‘em.

Cool.

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"Messenger" Bridget Mathis can use our support.

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Dear President Obama

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

Dear President Obama,

 

My name is Melinda Marchiano, and I am sixteen years old. I am writing to you today because I see an urgent need for citizens of our country who are in desperate need. The citizens I am speaking of are the smallest, most fragile, and most incredibly brave people you have ever seen.

The citizens I speak of… children with cancer.

Did you know that cancer is the #1 disease killing children in our country?

Did you know that when children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults?

Did you know that the National Cancer Institute and the American Cancer Society allocate a smidgen of their budgets to childhood cancer?

Did you know that there has not been a single new drug approved to fight pediatric cancer in the last twenty years?

Did you know that CureSeach believes—with adequate funding—a cure is within our reach?

On March 16th and 17th, Childhood Cancer Awareness & Advocacy Day will take place on Capitol Hill. Please support the “Creating Hope Act of 2010” that was introduced by Senators Brownback, Brown, and Franken, and other childhood cancer legislation.

There are 40,000 children in the United States fighting cancer as I type these words. They need hope. Their parents need hope and their siblings need hope.

We are forgetting these children. There is no major celebrity to speak for them. There is little awareness of childhood cancer in our society, and what this translates into is suffering children.

I love my country—a land where anyone can speak for what they believe.

I believe these forgotten children need a Children’s Rights Movement.

I am the first to join the movement. Will you be second?

With my sincere gratitude,

Melinda Marchiano

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

 

Thinking of Anais on her Disney trip... have fun!

 

 

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Get “The Baby” Out of the Car!

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

What an incredibly beautiful day it is here! The birds are singing, and the sun is shining warmly upon me. (No offense to those who are buried in snow—I would actually enjoy meeting snow sometime!) I am not only basking in the sun, but I am basking in gratitude for the love in my life. I am as grateful for the love I have to give as I am grateful for the love I receive.

Can I tell you how grateful I am for your love?

It feels like the presence of gratitude multiplies love inside me—exponentially.

Gratitude drives me to look outside myself to find others in need. I know this sounds weird, but I am grateful for gratitude!

I think gratitude grows rotten and ferments inside us unless it gets “baked” into something that will help someone else. When we express gratitude in kindness and love for others, it bakes a Big Batch of Love.

Those who know me know exactly where I am going…

I see a HUGE need. Tomorrow, 46 children in the United States will be diagnosed with cancer. Tomorrow, 7 children in the United States will die from cancer. There has not been a single drug approved to treat pediatric cancer in 20 years. Pharmaceutical companies contribute 50% of funding for adult cancer research, and virtually nothing for children’s cancers.

Does this sound right to you?

It does not smell like something is baking at all. It smells to me like something is fermenting.

The more I learn about what is happening (more like what is not happening,) the more I know I must express my gratitude for my life by speaking out to try to help children who have been forgotten. It’s like when a baby gets left in a car on a hot day with many people around. Everyone thinks everyone else is tending to the baby. Meanwhile, the baby is ignored and left to die.

Please don’t think someone else is taking care of this; don’t wait for someone else to “Get the Baby Out of the Car.” There is a lot of work to be done. Become a worker bee to stop childhood cancer.

“See that you do not despise one of these little ones. For I tell you that in heaven their angels always see the face of my Father who is in heaven.”
(Matthew 18:10 ESV)

Please keep Anais Medina in your prayers for no fever and a great Disney trip.

Please continue your messages of support to CristaOrtz@gmail.com

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

Teach us, Anais! The spirit of a child with cancer!

 

 

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Truth And Accountability

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

Today, all day long, I have been thinking of Mr. Nunn. Today is Mr. Nunn’s birthday. Today is not a happy day for him, like all birthdays should be. You see, Mr. Nunn’s birthday is here… but his son Max is not.

Rather than attempt to repeat Mr. Nunn’s eloquent words, I will give you a link.

http://www.facebook.com/note.php?note_id=501647544510&id=710541355

I imagine if each parent in our country could feel in their heart what Mr. Nunn is feeling today, we would fund research for childhood cancer in an instant.

In an Instant.

Somewhere, as human beings who inhabit this Earth, we seem to have lost sight of the pure, innocent, and needy. We will spend hours in front of the tube watching “reality” shows of people behaving badly, but for some reason, the media steers a clear path around the subject of childhood cancer. Our minds get clogged. Our hearts get clogged. When everything gets clogged, life becomes meaningless.

Sometimes it’s easier to get lost in the World of Meaninglessness than it is to look at truth. If we stare truth in the face, it means we need to be accountable.

Here’s to Truth and Accountability

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

Please be a support to Crista… Thank you for passing this on: “I know you know many survivors…can everyone on your facebook please send a message of hope & encouragement to Crista Ortiz. Shes my friend & battling Hodkins cancer spread to her lungs. We need cards and messages sent to CristaOrtiz@gmail.com Please, the parents are asking everyone for help. Please post this on your wall if you’d like. She’s 15 yrs. old and going through the most severe chemo treatments for the next 2 weeks. Prayers are needed and please send a note. Especially young adult survivors!!!” Crista Ortiz 12122 Ramla Place Trail Houston, TX 77089

Thinking of Mr. Nunn and his son Max today


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Who Raised Their Hands?

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

Yes, the Floodgates have seriously opened, with thoughts, ideas, and plans riding the rapids while I attempt to find a rudder to control my path. With opportunities opening before me to be able to help children with cancer, I search for the path that will bring a cure. The “Messengers of God” I spoke of yesterday are depending on each of us; their families desperately need our help.

Since the causes of childhood cancers are largely unknown, people speculate as to what the causes could be. Some people blame the environment, some blame genetics, and some people blame God.

They shake their heads and say, “Why does God give children cancer?”

My mom has the best answer for this question that I have ever heard.

This is what she believes, and she will tell anyone who asks!

God does not give children cancer. God heals. She imagines God gathering His children before He sends them to Earth. He explains that He needs some volunteers for a mission. He also explains that these volunteers will have to endure great suffering for His Kingdom, but that they will be a light in the darkness of this World. They will lead great numbers into the light.

Guess who raised their hands?

The “Messengers” did.

God’s Messengers keep inspiring me. I hate that they raised their hands, because of all the pain they endure. I love their selflessness in expressing their love for God and humanity.

I love God’s Messengers.

Messenger Reefie and his Grampa

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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

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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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