A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

I’ll take it “Raw”

 

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

I received a call last week from a nearby cancer center, telling me of a patient who read my book who wanted to speak with me. This patient admitted that the woman at the cancer center had warned her about reading my book; she was concerned because the woman is having a difficult time right now in her own battle with cancer. But someone had recommended my book to this patient, so she chose to check it out—even though the woman at the cancer center described my book as “Raw.”

 

I have rolled this adjective around in my head, and I have concluded it is an accurate description. In fact, this was my goal, complete honesty. I didn’t want to sauté, fry, or barbecue my cancer story, nor did I want to coat it with goopy, sweet frosting. I wanted to tell the truth.

I guess truth is “Raw.”

I know sometimes people are uncomfortable with the truth. When we began working with Greenleaf Book Group a year ago to create the second edition of my book, they recommended that I end it at the point where I finished chemo. My mom composed a four-page rebuttal, detailing why cutting off the recovery part of my story would be like “chopping off a body part.” (Guess who won this debate?)

I knew I had to include my recovery if I wanted my story to be truthful. The truth was, for me, my cancer battle was not over when treatment ended. It was the beginning of a whole set of other problems that turned out to be the most fierce battle of all to get well. I want more people to know that this is truth for many children. Not only do I want people to know this truth, but I want people to understand that, after cancer treatments, children are like “giant, open, walking wounds,” with a huge job of recovery before them.

I understand why people would not want to hear the truth. I understand why they would want to conceal it and hide it under a rock. This doesn’t work for me. I imagine how much easier it would be for children who are in recovery if we all understood what they are feeling physically, mentally, and emotionally.

Even though it may be tough to chew and hard to digest, I believe in truth.

To finish the story about the woman from the cancer center who read my book… she contacted me and told me it was “just what she needed.”

Some people do like truth =)

I wonder if anyone will make me put a Warning Label on the cover of Grace: A Child’s Intimate Journey Through Cancer and Recovery?

Warning! Truth may be hazardous!


Please support Tom Nunn and Jodie Nunn in their efforts to raise money for St. Baldrick’s. Please give today in memory of their son, Max, who would have turned eight years old today.

Thinking of Max today... on his birthday


 

 

 

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“God Gives Children With Cancer Something Extra”

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

Continuing my thoughts from yesterday’s post about the need for celebrities to Step up to the Plate to become dedicated advocates to help raise money for childhood cancer research, I want to acknowledge some people who have come up to bat. One person I want to thank is Jeff Gordon, for his compassion and dedication to establish Jeff Gordon’s Children’s Hospital . Another person who has given from his heart to help children with cancer is Jeff Foxworthy. Mr. Foxworthy has been an advocate for children with cancer for many years. He has helped CUREChildhood Cancer, and he has also helped me.

It was nearly a year ago when I began sending out requests for testimonials/endorsements for my book. I wish I could communicate all that I learned from this process. It was highly educational; I learned a lot about the human spirit. Right away, I heard back from a kind woman named Maggie, who told me that she forwarded my request to Mr. Foxworthy and he responded swiftly and with compassion. This told me he is one of the special people with a loving heart for children. I also learned has given from his heart to help Duke University Children’s Hospital. The words he chose for his endorsement told me he has spent time with childhood cancer warriors; he is not just posing for photos with bald children to boost his likeability. (Do people really do this?????)

This is what he wrote for me, and what he wrote to help other children with cancer:

“I have often said God gives children with cancer something extra. They are remarkable and inspiring people to be around. Melinda tells her story with such honesty and openness that you can’t help but be touched and encouraged. This is sure to be a blessing to all who read it!”

He included a note, saying that I could edit it or “throw it in the trash can!”

I just love Jeff Foxworthy!

Others celebrities who stopped their lives to respond kindly included Ray Romano and Kathie Lee Gifford… I send my deep gratitude to each of them for their contributions.

The responses to my request were as varied as the people who inhabit our Earth. Some people responded with kindness, even when they chose not to help. One response that came from a famous young singer (who I will not name at this time,) I will admit, was a bit disturbing… it ruffled my mom’s feathers.

This was the response from her publicist: “I don’t think childhood cancer applies to _______.”

Now, for my mom, a no answer was just fine. But this statement, for my mom and I imagine for many other parents, was just the same as stating, “I don’t care about children with cancer.” Does childhood cancer have to “apply” to us before we realize that it is the responsibility of every living, breathing adult to care for the children in this world? How can it be that there has not been one new therapy approved to fight childhood cancers in the past twenty years, yet our technological advances have grown exponentially?

This is entirely unacceptable.

Children who “make it” through their tortuous treatments are losing their battle after the battle. The treatments are so toxic that the side effects when treatment ends can be brutally painful and life-threatening.

This is why I keep writing… everyone needs to hear… everyone needs to help.

My friend, Breanna, who I have been asking you to pray for, left this Earth for heaven last night. She made it through her treatments, but effects from treatment caused complications that were too much. Please pray for Breanna’s family, and please do everything you can that will help find a cure.

Breanna (on the right) and her friend Sammie

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Mystery Celebrity, Step up to the Plate

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

I find it meaningful that the only knowledge most people have of childhood cancer is from what they know about St. Jude Children’s Research Hospital. My mom supported St. Jude’s before I was even born. Perhaps one of the reasons people have heard about them, besides the valuable work they are doing, is because of their well-known supporter, Mr. Danny Thomas. Danny’s celebrity status made everyone who loved him care about his cause.

I have asked before, “Where is our Danny Thomas?”

I wonder why there aren’t a plethora of celebrities who connect to, and support childhood cancer research. There is not one celebrity we connect with this cause. This is a problem because our society is composed of many people who are “followers.” They look to someone who they can connect with so they don’t have to make their own decisions.

There has to be someone who will Step up to the Plate for children with cancer. Is this not the cool thing? Would they lose their fan base if they spoke out? Is there a celebrity who will recognize that the prize on this Earth is not fame, but what they can accomplish with their fame?

We overly concern ourselves with the lives of celebrities. I realize I cannot change this, but I can recognize that this is truth and use this truth to push forward for a cure for childhood cancer.

Remember…  the experts say it is only “funding” that is holding us back from finding a cure.

Hello? Celebrities? We need you.

Please join this team of passionate advocates, and become a leader who makes everlasting, life-saving changes in the lives of our dearly loved children.

Please pray for Bridget…

http://www.fightingforbridget.com

Please pray for Bridget


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Beams of Light to Heaven

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

I believe with all my heart in the power of prayer. This doesn’t mean that I believe that God will grant each and every request from my lips, but it does mean that I know He hears us when we pray. His answer is not always the one I am hoping for, but I trust Him completely with my life. I believe prayer “prepares fertile ground” for miracles to happen.

The World of Childhood Cancer is filled with prayers. I remember when I was extremely ill how grateful I was for prayer. This will sound strange, but I could actually physically feel people’s prayers for me. It was not only a mental and emotional sensation, but it was truly physical as well.

I read something that someone wrote about her near-death experience. She explained that while she was technically “dead,” she saw colorful rays of light beaming up from the Earth to the heavens. The colorful rays of light were prayers on their way to God.

Let’s send beams of colorful rays to the heavens for the childhood cancer warriors who are fighting the fight of their lives:

Braden

Kate

Breanna

Crista

Jaxson

Kristy

Lisa

And prayers for each one… all 40,000+…

Bless you for your Beams of Light to Heaven

Please Pray for Kate

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Forgotten

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

Forgotten.

 

I read something today that illustrates the width and depth of the needs of the Land of Childhood Cancer. I read about a boy fighting cancer. His father lost his job and now his son has no medical insurance. If you are a parent, please imagine your child fighting for his/her life while your financial world crumbles around you. Would you feel helpless, hopeless, forgotten?

Today, I would like each reader to put themselves into the shoes of this father.

What are we thinking—what are we doing—when our taxes pay for medical care for criminals in prison, but this father finds himself in this horrible position? This father is not alone. There are many, many other families (even those with “good” insurance) who find themselves financially devastated from the insurmountable medical bills. I find it very, very interesting that in the world of Childhood Cancer Parents, not one speaks about this… all of their focus is on the children.

But for today, I want to focus on the parents who provide support that is beyond what any parent should ever have to face. I love you, all of you parents of children with cancer. Your job is huge, and your hearts are even bigger.

I thank you.

Today, I salute you.

This is someone who has not forgotten you…

MattieMiracle Cancer Foundation

 

 

 

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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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