A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Dear Ms. Katie Couric

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

 

Dear Ms. Katie Couric,

There is great hope abounding.

Tremendous news travels fast! The news that you have shown even a speck of interest in the story of 54,000 people asking Oprah to do a show on childhood cancer is like a brilliant ray of sunshine and hope. I will search for the words that will express exactly how I feel…

I wonder how we, in the United States of America, can be so wrapped up in Meaninglessness that we are blind to the most vulnerable and weakest among us. I wonder how we tolerate the injustice of pharmaceutical companies turning their back on the development of new therapies for children with cancer— for the sole reason that they cannot make a profit. I wonder how we can stand quietly watching while the largest of our nation’s cancer fighting agencies allocate only a pittance to childhood cancer.

I wonder why there are not enormous “Armies” coming to the rescue to fight the #1 disease killer of children in our country.

I wonder why people know so little about childhood cancer that children are dying as a result.

Finally, I wonder what the effects would be if someone, like you, would open and broadcast the World of Truth of how grossly overlooked and underfunded childhood cancer is.

Like others, you are probably shaking your head and asking, “How can this be?”

I don’t know how, but it is, and we need to change it now.

I cannot close without adding that the “story” behind this story needs to be told. I speak of Christine who was inspired by her friends, Deliece and her son—both fighting cancer. Imagine a friend so loving, so caring, so dedicated, that she would gather an Army of over 50,000 people to fight for friends… to fight for a cause… to fight for children who cannot speak for themselves.

They cannot speak for themselves… because they are too busy fighting for their lives.

Ms. Couric, your attention to childhood cancer will without a doubt save lives. This is what we are all reaching for… with everything we have…

The children need your heart. I pray you will give it to them.

With my sincere gratitude,

Melinda

 

Alexis Wants us to Find A Cure!

 

 

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Hope is a Necessity

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

Lookout motorists, Melinda is—as of today—a licensed driver. Please don’t ask me why I am speaking in the third person:)

The whole process feels like it began eons ago… like I have had my permit since I was three. It was tough to schedule in those pesky driving lessons, and even tougher to brave the DMV for testing and paperwork. But the icky-sticky process is complete, and this Quail now has wings (that is how my brother, Nicholas, describes it!)

While I am on the subject of driving and wings, I will tell you about a trip my mom and I are planning for this summer. I am so excited about this!

I will begin explaining by sharing this excerpt from Grace:

“With self-pity once again sneaking in the back door, I became suddenly distracted by a girl, slightly older than me, walking into the room. She filled the room with her shining smile and warm, radiant glow. Nurse Pam introduced her as Rachel, one of their patients who had beaten Hodgkin lymphoma about a year before. We shook hands, and I noticed her short, wavy hair. It looked cute. As I continued to receive chemo, she approached me, and we began to talk. She told a little about herself, and then we started in on a discussion of treatment and recovery.

“Poor Melinda here has had a tough first round,” Nurse Pam empathized,

flushing my PICC line with saline.

Rachel gave me a compassionate look. She had once been there. I could read it in her soft, brown eyes.

She looked straight at me and said reassuringly, “Don’t worry.”

Her calm, gentle voice was soothing.

“The first time is the hardest, and then it gets easier and easier with each

round.”

I believed her. She had been in my spot a year ago, and I trusted her completely. It is amazing how two strangers, people who have never met, can be instantly bonded by something in the world. Our lives are an intricate web of roads, each an option to go down. Yet, it seems to me that every single person we come into contact with is meant to be. Rachel and I are two humans, plopped down here on Earth, bonded by an unforeseen medical nightmare.

As she waved good-bye, I waved back, feeling like I had known her my entire life. I believe God placed her there that day to give me hope, determination, and courage. Looking to Mom, who sat in a little blue chair, I saw she had tears in her eyes, and that’s when I realized that, I too, had eyeballs brimming with tears. I wasn’t even exactly sure why I was crying. Rachel had inspired me, and her simply standing there, a happy and healthy girl, gave me a picture of my future. It gave me a goal. I was in awe of the way that God created a bridge for us and used one life to touch another.”

Copyright/Melinda Marchiano/ Grace: A Child’s Intimate Journey Through Cancer and Recovery

I will never, ever forget what Rachel did for me the day she visited. She gave me hope. Children with cancer fight and fight and fight, and they need a vision of hope. I want to be able to do for childhood cancer warriors what Rachel did for me. I want to visit with them and spread hope.

As my mom and I travel to visit the children, I plan on writing my next book about our adventures and the remarkably courageous children I meet along the way.

http://www.dosomething.org/project/childrens-hospital-hope-tour

Adorable Isa Mireles/Survivor!

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Courage is…

 

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

Yesterday, I asked my friends what their definition of courage is. I love each definition.

 

Thank you, my truly courageous friends, for sharing with me…

Courage is:

-a cancer child everyday living

-standing up for what you believe in even if you’re standing alone.

-keeping the Faith when all else is against you!

-like the cowardly lion .. we all have it in us somewhere … we just have to find it…

-feeling like giving up, but knowing you can’t

-getting up everyday no matter what faces you. sometimes you walk. sometimes you crawl. . sometimes you run into the storm. . but no matter how much you want to you never run away.

-what a cancer child has… you guys have so much courage to go thru so much and still be the bright young kids that you are

-having the guts to keep forging ahead, even though your body, and natural instincts, may not agree with that decision.

-to face and endure what you fear the most whether by choice or not…whether the outcome is favorable or not

-continuing to climb that mountain knowing the next one could be even higher, taller, larger, harder to climb. Children with Cancer have so much courage! Courage to believe even when you have no proof

-to be scared, to recognize that fear, and to proceed anyway.

-knowing you don’t want to do something, but doing it anyway, for someone’s sake/help – yours or theirs.

-knowing the journey ahead of you is going to be hard to manage, but you just get up and “DO IT” all-the-while staying strong, positive and focused on the best possible outcome!

-just doing it even when it takes all you have got to do so!

-my daughter Ashlee, she had lots of courage facing a fight for her life head on and never backing down. She is an angel in heaven now but she is still my strength and courage

-“Bravery isn’t being fearless…it’s doing the feared.”

-mental or moral strength, having faith

-after watching my son fight…. I define courage as being able to endure anything thrown at you, not being afraid of it, but still being filled with joy and happiness, no matter the outcome.

-believing that God loves you enough through your circumstances to perform a miracle within you.

-after watching my 22 month old daughter fight her cancer and losing, I define courage to be able to stand up and realize there is a purpose for our trials. If I did not I would not have met you Melinda and endorsed your book Grace.

-my husband…being a paramedic,firefighter and police officer he has to see some very gruesome things and lots of death…but still he keeps on going helping people as best as God allows.

-sometimes it isn’t about what you have to do, but about being able to let go of what you no longer can do…

-along with what everyone said I add, making a difference. Standing for what u believe in, being unique, doing the right thing even when everyone’s doing the wrong thing.

-hearing the words “you have cancer”, not crying but saying what do we do next. Never asking “why me” and never letting yourself feel sorry for yourself…this is my cancer journey. My other suggestion above was how I felt when I decided to close my scuba business. Everyone said it took courage to open it and I always said it took more courage to know when to close it and let go of it…

-for me, true courage comes when a cancer patient, especially a child who is still so young, finds out that there are no more options, no more help. Yet they hold on to hope and continue to smile each day, they allow themselves to be filled with the joy of the life they have left, the day in front of them, rather than sink into despair at what they will be losing.

-the will to do what’s right 🙂

-happiness

-♥ ♥ ♥ MELINDA ♥ ♥ ♥ and ALL of our Cancer Warriors and Princesses and everything their families have to endure…thats COURAGE!!

-to do the thing you fear, because what you need to do is more important than any fear that is probably not real anyway.

-going above and beyond one’s comfort zone. Doing things that a person is normally not accustomed to doing in which there is a certain risk in doing so. It could be for that person’s own benefit or for the benefit of others.

-kids like you fighting horrible diseases.

 

Please Pray For Breanna

 

 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.” ~ Mary Anne Radmacher

“One isn’t necessarily born with courage, but one is born with potential. Without courage, we cannot practice any other virtue with consistency. We can’t be kind, true, merciful, generous, or honest.” ~ Maya Angelou


 

 

 

 

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Happy Hug Club

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

On the way to school yesterday, I noticed a woman driving past us and made a comment to mom.

“She needs a hug.”

My mom chuckled a bit, not because the woman needed a hug, but because my words painted a vivid picture in her mind of what the lady looked like, even though she didn’t actually see her.

Isn’t it just the best thing ever when someone gives you a hug, especially when you really, really need one? There must be some sort of spiritual power in hugs… like the unleashing of God’s love in this world. I am not recommending any studies, because I am thoroughly convinced that hugs have medicinal value—physically, mentally, and spiritually.

As my mom and I spoke of the woman who looked like she needed a hug, I began telling her about a suggestion that came from one of my teachers.

Mrs. Stoneman told me, “Melinda, you are always so happy. You should start a Happy Hug Club!”

Because I am a firm believer in the discovered, and yet to be discovered, value of hugs, I am beginning the Happy Hug Club today. The mission of the club is to give and receive as many hugs as possible. Anyone can join. If you would like to join today, just leave a comment below…   you are automatically entered into the club.

For your initiation, find someone to give your first hug to and have them pass it on!

Welcome to the Happy Hug Club! Have a huggable day!


I love this photo of Olivia… the joy on her face when she received her wish is precious!

Olivia receives her Make-A-Wish!

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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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