A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for February, 2011

World After Treatment

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

Gosh, did I ever strike a nerve with yesterday’s post! First off, I need to thank everyone who messaged me to thank me for my “Raw” honesty. Guess who really appreciates the honesty?

 

…adult cancer patients & childhood cancer patients and their parents…

Interesting.

My mom scoured everywhere for information when I was in treatment and even after treatment. There are some books and pamphlets that mention “late-effects,” but we haven’t found anything that truly describes what children, in particular, face when their treatments end. It almost seems as if the medical world does not want to reveal this. It might make their job harder to get patients through treatment if patients/parents knew recovery was going to be dangerous and difficult as well.

One mom told me, “It helped both of us to know it was normal for her to have these feelings.”

Another survivor said, “Truth helps you prepare yourself.”

And yet another pearl of wisdom, “The truth will set you free.”

One of my great concerns is that I don’t want other children to have to face unnecessary hardships when they return to school after treatments. My teachers were extremely helpful and supportive, but this was not the case with the administration. (Could this be because the administration deals with costs associated with “special needs” kids? Hmmmm…..) If I can help administrators understand the needs of children recovering from cancer, what a better World After Treatment these children could have.

I say they have suffered enough. Let’s give them truth. Let’s understand they have a huge job to do in recovery. Let’s open our minds and our hearts to truly meet the needs of children who have fought, and who are fighting, the battle that is childhood cancer.

*Please keep Jade in your prayers– surgery tomorrow.

 

Hair!

 

 

 

 

 

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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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