A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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Croak Cancer, Croak!

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

Swirling feelings from many directions have me spinning a bit today. I am very, very excited about being one of 251 people throughout the world who have been chosen to be 2011 LIVESTRONG leaders. At 7:00 am, I listened to my very first LIVESTRONG conference call. May I please admit that one of my favorite things about the experience was hearing different accents from all over the world? This is something I love about LIVESTRONG—they see cancer as a “global threat” that needs immediate attention. Truly, the entire world needs to notice, needs to learn, and needs to act now to fight cancer.  I am grateful for this opportunity to help LIVESTRONG make survivors stronger each day… and most of all, for the opportunity to help make cancer so weak that it croaks.

Yes… I wish cancer would croak.

As this day has progressed, I received news… bad news. I have an event scheduled for this coming weekend for the University of Art in San Francisco; they are raising money for the University of San Francisco’s Children’s Hospital. For a couple of months now, I have been communicating with a lady named Rachel who is planning this event. I haven’t heard anything from her for the past two weeks—until today. She has been spending countless hours at USF Children’s Hospital because her nephew, Sy, was diagnosed with a rare form of cancer two weeks ago. She has been planning this event out of the kindness of her heart to help fight pediatric cancer, and now, she is personally affected by the horror of  her loved one being struck by this terrible beast. Please pray for Sy.

To top off the swirling, I received mail today. I received Breanna’s program from her memorial service. Her mom, Helen, was very kind to send it to me.  I cried looking at her photos. I cried looking at her smile. I cried imagining what her family is feeling. I cried to know that she fought so hard, suffered so much, and now she isn’t here.

Yes… I wish cancer would croak.

Croak Cancer, Croak!

My buddy, Braden Hofen is telling cancer to croak too. In his own words, “Take THAT cancer!”

Go Braden! Go Sy!

Braden says, "Take THAT cancer!"

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I Want to be a Mommy Someday

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

“It may sound odd to discuss fertility issues still decades away as parents agonize over whether a child will live or die.”

 

When a child is diagnosed with cancer, one of the very last things on parents’ minds is what cancer treatments might do to their child’s future fertility. Even further from their minds is investigating what might be done before their child begins treatment that might help their child become a parent in the future, if they should choose to do so.

Dr. Kyle Orwig, of the University of Pittsburgh is leading a study to help preserve young cancer patients’ fertility. Being the Biology/Chemistry nerd that I am, I find all of this fascinating. Further, Dr. Teresa Woodruff of NorthWestern University’s Oncofertility Consortium is working with young female cancer patients to protect their fertility. Most of us have heard of freezing eggs or sperm, but these researchers are going beyond to find help for those children who have not yet reached puberty. Girls are born with all of the eggs they will ever have, but these eggs remain “immature” until puberty… so harvesting for the purpose of fertilization is not currently possible.

I send my sincere thanks to Dr. Orwig and Dr. Woodruff. Thank you for your efforts, not only for saving the lives of children with cancer, but for clearly focusing on future quality of life issues for survivors.

Once again, my heart goes deep into parents’ hearts out there… to those who must keep making health care decisions minute by minute for their child with cancer. There is so much to think of… and now here is one more thing.

Oh how these parents love their children!

There is help and there is hope brewing– fertility preservation for future childhood cancer survivors. I know, without a doubt, I would love to be a mom someday.

I pray that one day God will grant me this gift, this blessing. I pray more survivors will receive this same blessing as dedicated, caring researchers work toward this goal.

http://www.charter.net/news/read.php?rip_id=%3CD9LQI4S01%40news.ap.org%3E&ps=1018

Carley Parker... Ballerina & Survivor

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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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Logjam

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

When I miss communicating with you for a few days, I get all messed up. It’s like all of the things I want to share with you get plugged up like logs in a logjam. Then, in order to share my “logs” in an orderly fashion, I have to straighten them out of their tangle before they will proceed with any recognizable order.

Let’s see… Log #1 out of the gate…

Did you hear that Lance Armstrong has retired from professional cycling to dedicate his focus to fighting cancer? Most of you know how much I admire Lance and how much he inspired me during my treatment and recovery. I have seen stories in the news recently of Lance visiting children’s hospitals… can you guess where I am going with this? I sure would love to see LIVESTRONG expand their STRONG ARM in order to devote more of their efforts to combating childhood cancer. I think it’s great that they have the very unique LIVESTRONG at School where teachers can download age-appropriate materials to help their students learn about cancer. Did I tell you that I applied last month to be a LIVESTRONG Leader? Giggles… I forewarned them that I would be “infiltrating for the advancement LIVESTRONG’s childhood cancer subdivision!”

Log #2… untangling…

My mom and I have been working with a great guy, Benn, who is designing a new website for me where people can buy Grace: A Child’s Intimate Journey Through Cancer and Recovery. The site is www.melindamarchiano.com

Log #3… straightening…

We did some research before we chose a merchant processing system and we are very excited to tell you that we decided on a Give Back program that benefits Children’s Miracle Network Hospitals. Cottage Hospital is a Children’s Miracle Network Hospital and the people there saved my life… we love this choice!

Most importantly of all, I am thinking of and praying for all of the children who are fighting cancer and recovering from cancer today. I am thinking of the families who love their little warriors and who would go to any lengths to help them in any way. I am thinking of those brothers and sisters whose hearts are crushed by the site of suffering.

And for the moms and the dads who keep pouring out your love… till it can only come out in a drip… may God bless you and fill you up to the top again with His Living Water.

Prayers for Savannah

 

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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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