A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Teenage Author’

The Incentive is Love, not Money

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

I just conducted a very interesting childhood cancer experiment. I Googled “Childhood Cancer News.” The results I found are puzzling, and frankly disturbing.

 

The first article I found is dated October 11, 2006. Yes, really. Let’s see… nearly five years have passed, but this is listed at the top:

“ABC News: “Dark Side of Being Cured of Childhood Cancer”

If you do read this article, notice that it mentions Dr. Anna Meadows… the doctor I have written of before, telling how much I admire the work she has done in the area of childhood cancer survivorship. As more children are “cured” of cancer, this area of childhood cancer survivorship and quality of life issues will become something health care professionals must address.

“Today 80 percent of children with cancer become long-term survivors.”

“By the time survivors are 30 years out from their cancer diagnosis, however, almost 75 percent of them have a chronic health problem and 42 percent die or have severe life-threatening conditions.”

Hmm…. a little unsettling, no?

I love what Les Robison has to say:

“The No. 1 lesson is that we have to pay attention to long-term consequences,” said Les Robison, chair of epidemiology and cancer control at St. Jude.”

We desperately need less toxic therapies that will still assure a cure, but won’t leave permanent damage. Still, nearly five years after this article appeared in print, it is “current” news for childhood cancer.

Really? Really, really?

The reason?

Drug manufacturers cannot find a way to profit from the development of new, less-toxic treatments for childhood cancers… if they cannot profit from it, why would they ever do it? Instead, they stick to the development of new therapies for adult cancers that they can make huge profits from.

Arms Wide Open Foundation, established by Dena and Billy Sherwood, is on a mission to change this. There is even pending legislation that will hopefully encourage companies to take the plunge into helping children with cancer with incentives.

I can think of forty-six “Incentives” —the number of children diagnosed with cancer in the United States every school day.

I can think of seven more “Incentives”—the number of children who die from cancer each day in the United States.

A child’s life is worth so much more than “Incentives.”

Cure Childhood Cancer

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Burr Under Your Saddle?

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

Do you ever feel like you need a large dose of reality to keep your life priorities in order? Just in case you do… or maybe even if you don’t think you do, I know where you can receive a swift, long-lasting dose.

Click:

http://www.facebook.com/Oprah4KidsCancer

There are so many stories. I guarantee your heart will not want to read the stories. I guarantee it will be hard and heartbreaking. I guarantee if you push yourself through it and truly take in the meaning of these stories, your life will receive a huge Gift of Life Prioritization.

“Aniel French received his wings yesterday and we found out his closest friend Alex Brown is waiting to receive hers… their bravery and faith is and was unfailing and an inspiration to all that knew them, including their doctors and nurses.”

This, my dear friends, is the world of childhood cancer.

Imagine being a child, fighting the horrific disease that is cancer– and on top of it all—losing your closest friend to the same dreadful illness.

… and we get a Burr Under Our Saddle when we have to “do chores.”

Right about now, I am thankful I am able to do chores.

And you? Be truthful.

Do you need a Life Prioritization Gift to get that Burr out from under your saddle?

Go ahead. Click. Read. Be moved. Cry. Be changed.

Don’t you just know we all have so much more to give than we are giving?

I do.

Nine Boxes of HOPE

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You Do Not Have a Soul

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

Destiny Freeland was diagnosed with Stage IV Ewing’s Sarcoma… she has been through surgery, chemo and radiation treatments. I want you to look at her smile; I want you to look in her eyes. Inside of that People Shell that is giving her so much difficulty is her beautiful soul. Does it boggle your mind as much as it does mine to see Destiny with such pure tranquility in her eyes?

After I wrote about People Shells, I came across this quote:

“You do not have a soul. You are a soul. You have a body.”
~C.S Lewis

Through Destiny’s eyes, I see that she already knows this. She is not her body.

I believe this same enlightenment lives within all children who fight cancer or life-threatening diseases. They know they are a soul. They know the delicateness of life, they know their life purpose… they know there is only time for love. I can see it all through their eyes– the windows to their souls. I absolutely love the honesty and the purity of their souls.

Somehow, these children know that their bodies are temporary shells. Somehow they know that they have an important mission here on Earth. How is it possible that the smallest and sickest are working the hardest to teach us life truths?

It is time for us to follow their lead. Let’s start taking notes.

Imagine if each of us had that same honesty and purity in our souls… oh beautiful World!

Thank you for teaching us Destiny

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Take Me Out to The Ball Game

 

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

Dear Major League Baseball,

My name is Melinda Marchiano, and I am sixteen years old. When I was thirteen, I was diagnosed with Hodgkin lymphoma; I am thrilled to tell you I am now in remission.

The reason I am writing to you is to ask you to please consider assisting the cause of raising awareness and funding for research for childhood cancer. Childhood cancer is the #1 disease killer of children in our country. 40,000 children are fighting cancer right now. Every school day, 46 children are diagnosed with cancer. Seven children in our country will die today—and every day—from cancer.

I love how you support types of adult cancers, like what you are doing for “bat girls” and breast cancer. I can’t help but notice the glaring absence of attention to childhood cancer. Please continue to give the support you are giving for adults, and please open your minds and hearts to consider doing the same for our tiniest cancer warriors.

The National Cancer Institute and the American Cancer Society allocate a tiny portion of their budget to childhood cancer research. This leaves a huge open gap of need that small grassroots organizations are working passionately to fill. The vast majority of these organizations have been established by parents who have lost their child to cancer.

Baseball is as American as America. When I think of baseball, I think of summertime and kids at the ballpark with their gloves—ready to catch that foul ball. I can picture the joy on their faces to be in a real live major league ballpark watching their favorite players.

Baseball = Kids and fun

I would love to have Major League Baseball show its commitment to make a difference in the health of the children of our future by doing something big for children with cancer.

I see you On Deck… please step up to the plate and hit the ball out of the park.

Funding will find a cure.

I just know you can do it… “Take Me Out to The Ball Game…”

 

My buddy, Braden Hofen... Major League Bat Boy!

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Life is Tender

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

There are days in life where there is nothing I can think of but life. Today is one of those days. Maybe it was the news today that Tulsa’s Wilson Holloway passed away from Hodgkin lymphoma. Maybe it’s because I have been thinking of Breanna’s family all week-long and about her memorial service coming up this Saturday. Maybe it’s all of this combined with rain that has settled me into a reflective mode.

Maybe it’s because life is tender.

Yes. It is because life is tender.

Tenderness is something I love in life.

I find tenderness when someone looks at me with love in their eyes and tenderness in the soft voice of a friend. I love the tenderness of warm hugs and the tenderness of genuine smiles.

When I look at the photographed faces and into the hearts and spirits of the childhood cancer warriors I have posted, I see tenderness like no other tenderness here on Earth. There is a peace– a calming gentleness– that comes straight from their souls to fill mine. How they are able to mask the pain, the fear, and the helplessness with their angelic expressions is a miracle in itself.

I can’t help but believe that these little warriors already have the life wisdom to see life through the Great Zoom Out Button. They use this perspective to bring joy and meaning to those around them who can only sit back and shake their heads in amazement. They teach us that life is way too short to bicker, quarrel, or be nasty in any way.

They teach us we have a heart for a purpose.

Please be tender… just as our dearly loved warriors are teaching us by their example.

Please pray for Anais Medina

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The Great Zoom Out Button of Life

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

This is a day of international significance. This is International Childhood Cancer Awareness Day. Each year, 250,000 children in our world get cancer. 100,000 of these children die because they live in developing countries where they have no access to health care that could diagnose and treat their cancer. When I think of this, it brings me to my knees with gratitude that my life has been saved with treatment. It also illuminates the truth about just how huge the Childhood Cancer Monster is… if childhood cancer is as overlooked and underfunded throughout the world, as it is here in our country, we truly have a global health crisis.

 

Can you imagine? No treatment.

I have written a lot about how critical it is that we fund research for less toxic treatments for childhood cancer—but no treatment—this breaks my heart.

When children and their families enter the World of Childhood Cancer, it is time for full battle mode and they need every bit of medical and emotional support they can get. I will borrow the status of one of my Facebook friends to illustrate this point:

Mindi BaldmomsRock Finch

“A diagnosis of Childhood Cancer should come with a pair of boxing gloves and a punching bag. I’d consider it billable to insurance under Mental Health.”

(Thank you Mindi for this spot-on description!)

As childhood cancer advocates work diligently in our country to help fill the enormous needs required to wage war against the Childhood Cancer Monster, I need to wonder…

Could it be possible that we might broaden our sphere of awareness raising and research fundraising that we might include the entire world?

Let’s do it. Let’s press that Great Zoom Out Button of life.

Cole Chunn Melting Hearts

I received a wonderful message from Cole’s mom, Michelle:

 

“Melinda I will be attending 2 relay for life events where my son will be honored. I have asked my friends to send me one of the bracelets honoring their child for me to wear. I have received some response but you have many cancer family friends on here. I want to get so many that I can barely fit them on my arms. I want to make a huge statement!!! I plan to seek out the media but I want them to be shocked!!! Our kids need the exposure. Maybe you could mention this and get more people involved please. thanks Michelle they can send me a message and I will send my address.”

Thank you for helping Michelle and Cole in their mission:)

 

 

 

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People Shells

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

Happy Valentine’s Day to all of you dearly loved hearts with People Shells around you. That’s really what you are you know. At least that is how I see you… or should I say, feel you?

What I never expected, never anticipated, about this “sharing” journey I have embarked upon, is the joy I have found in meeting and getting to know all of you. The fruit of the joy– deep, caring friendships with people I never would have met. Our lives would never have intersected, and my life would be less rich, and my heart would be less full.

Many of the people I speak of are people I have never met face to face.

Now Melinda, how can you possibly love people you have never met?

I believe in People Shells.

I don’t need to see your People Shell to love you.

Your hearts come through boldly and brilliantly through your words of love, kindness and encouragement. Your compassion for your fellow humans sparkles in your actions that are evident to all around you.

I am blessed… so very blessed by your hearts.

The love I receive from each of you is precious to me. I will not ever waste it.

I’m gonna recycle it !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I LOVE YOU!

 

 

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Toss The Match

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

It will not be long before I begin my United Way grant project. One extremely important message that I want to be sure to let the students know is that they are able to do great things. Good things take a lot of time and a lot of effort. Sadly, it seems like many people in our society look for the Easy Road.  In fact, there are people who will spend tons of time and effort pursuing the Easy Road, rather than buckling in for the hard work it takes to create something of value. This is misleading and damaging to our youth.

Melinda’s Message #1:

Work hard to create something of value.

This hard work can take a multitude of forms—from studying hard to become the best student they can be– to recognizing a need in their community/world and dedicating their time and effort to fill that need.

This is my belief: Kids have tons of energy, creativity, joy, passion, and love inside them. They want to be able to help people; it makes them feel value. When kids give from their hearts and feel their lives have value, there is no stopping what they can accomplish to make our world better for all of us.

Sorry… here is Melinda with the “Raw” truth again.

“Work hard students.”

I am sure some students will want to run and hide, but there will be those kids who have kindling inside them… just ready to ignite…

Can’t wait to Toss the Match!

“Don’t let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity.” I Timothy 4:12

Prayers for Morgan...

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Where oh Where is There Great Information?

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

I have a question for you. Where do you go for up-to-date, accurate information about childhood cancer? Where can you look for important facts, pending legislation, a list of resources, a summary of what other childhood cancer foundations are doing, personal stories, and much more?

People Against Childhood Cancer, or PAC2.

This organization was started by someone I look up to. If I am looking for answers to important questions about childhood cancer, this is the man I ask. And you know what? He always, always, takes the time to answer my questions with sincere helpfulness. I appreciate the way he takes lots of information from many sources and synthesizes it into a meaningful package. I love how it is a place for many organizations to share their voice.

I love how this man has given his heart and soul to make the world a much better place for children fighting cancer. I love how this man is working his ever-loving you-know-what-off to do all of this and, at the same time, raising money in memory of his son to fund pediatric cancer research.

The man I am speaking of is Bob Piniewski.

Here is a great opportunity to help him in his current efforts to stop childhood cancer… Bob will be shaving his head to raise money for St. Baldrick’s.

http://www.stbaldricks.org/search/everythingresults/searchValue/bob+piniewski/submitEverything/Search/

Right now, before you move on with life, click that little linky-dinky above. Please consider what you might do without this week so that you can donate even $5. Think about the sacrifice that my friend, Bob, has made. Please think about the children who truly need our help. Please give what you can.

Thank you Bob, for everything…

Please help Bob raise money for St. Baldrick's in memory of AJ

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May God Bless Onc-Moms

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

Today, I am thinking today of all of the moms of children fighting cancer. Somehow, these moms manage to become Superheroes while they prepare for battle against the Monster that is childhood cancer. In a time where most people would emotionally fall apart, these moms find super-human strength in their bodies and spirits. They want to take the disease themselves; they want to protect their child at any cost.

 

When they are tired, they push on. When they are lost and broken, they find the strength to show their child the love in their heart. When they cannot utter a word, they smile to let you know everything will be okay. When their child is helpless, hopeless, and hurting, they snuggle up next to them and hold them like they will never let them go.

Dear God,

I pray for your great blessing on mothers who have helped their children with cancer. Lord, I pray for your tremendous love and power to enter their hearts to help them with all they have to process and all they have to accomplish. I pray you will give them hope, clarity, peace and strength. Please give them wisdom to recognize the needs of their children and help them to know that the job they are doing is a direct calling from you.

Finally, I ask you to bless my mom for all she has done for me. Please bless her on this day–her birthday–and always.

I pray this with deep gratitude,

Amen

The news from Savannah’s CT are not good… please pray for Savannah.

http://www.caringbridge.org/visit/savannahswandal

 

Please pray for Savannah

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