A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Bursting Bombs– One Life Gone

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

My brother, Dean, told me today about a friend he grew up going to school with—a friend he played sports with for many years. I remember this friend of Dean’s always playing with unabashed passion, and I remember playing basketball in the same league against his younger sister. Dean was visibly shaken as he told me about his friend… his nineteen-year-old friend.

A doctor told Dean’s friend he has just a few days to live; he has been battling cancer for over a year. The cancer first blinded him in one eye, then the other, and then it moved to his brain. How devastating this must be to his entire family. How devastating this is for one more young life to be ravaged and destroyed.

Tomorrow, forty-six more children will be diagnosed with cancer in the United States. Seven children will die.  

I read in my Government homework that we spend $500 billion a year for National Defense. I propose we re-allocate $100 billion of this to fight the war against childhood cancer. Childhood cancer is an invisible enemy that uses stealth tactics to destroy the lives of children and their families. This insidious enemy attacks children in their own land, in their own homes, and it invades their innocent, healthy bodies for the purpose of destruction. I cannot imagine a more violent, threatening enemy than childhood cancer.

I wonder…

If bombs burst in the sky each time that childhood cancer rips a child’s life away, would we pay more attention?

Childhood cancer is war, and it needs all the National Defense it can get.

Children's Hospital of Philadelphia Seahorses

Your Advocate Opportunity Today

Vote for Isaiah Alonso Foundation Pepsi Refresh Click!

http://www.refresheverything.com/helpfamililesbattlingchildhoodcancer

 

 

With love for Lily Blackman…  passing this on…

“Please pray for Lily Blackman’s family, Lily earned her angel wings….”She’s gone. She tiptoed into heaven before sunrise this morning with her mommy and daddy by her side. We miss her so much already. Arrangements will be made later today with Cumby Funeral Home in High Point, NC and Immaculate Heart of Mary Catholic Church also in High Point, NC. 

Thank you for your prayers for Lily.”
http://www.caringbridge.org/visit/lilyblackman

 

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Melt My Heart

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

“One of the hardest things about being a cancer survivor is realizing you don’t have to be in pain…don’t have to just accept and DO because you have to…..it’s realizing you actually have a choice now…”

While I was in Boston on the Children’s Hospital Hope Tour, I got to meet someone I have come to admire… someone close to my age… someone who not only advocates for children with cancer, but someone who is studying to become a pediatric oncologist. This beautiful person’s name is Khadi and Mom and I met her at Boston Children’s Hospital. I learned about Khadi and the non-profit organization she started called Hope for Kids Cancer through Facebook.

I was happy to discover that Khadi was up for adventure as we wandered the basement halls and past loading docks, looking for their Family Resource Center. After asking several locals if they would be our GPS, we not only found it, but we had the chance to meet one of the nicest people we met on our trip, Kate Simonelli.  We left a book with her and snapped a couple of photos before we left for more discoveries.

With Kate and Khadi at Boston Children's Hospital

We were able to find Dana Farber Resource Center, thanks to a kind police officer who pointed us in the right direction (you can see we were directionally challenged!) I did not know this story at the time, but learned of it a few nights later from the emergency room staff at Lawrence Memorial Hospital…

When Dana Farber was constructing a new building across the street from their old building, the construction workers could see childhood cancer patients through the windows of the old building. A game began where children would hold up signs with their names on them and construction workers would write the child’s name in spray paint on the steel construction beams of the new building. Sometimes, children would hold up signs that read, “Go Red Sox!” Whatever was on their signs became permanently written on the frame of the new building. Workers could be seen wiping away their tears as they would finish their name spray painting.

http://www.dana-farber.org/Newsroom/News-Releases/What-s-in-a-name–For-patients,-a-piece-of-history.aspx

http://www.youtube.com/watch?v=87rKU7fg6DA

Melt my heart…

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Dear Mr. or Ms. BIG NAME Fashion Designer

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

I am sitting here in my soft, long-sleeved, pink “Team Max” shirt and ideas are bouncing around in my brainola like ping-pong balls. I love my Team Max shirt! I love not only its softness, but most of all that I am able to raise awareness of childhood cancer every time I wear it. I even have the opportunity to answer people when they ask, “Who is Max?” This is my very favorite part; I love having the chance to tell people about one of my biggest heroes. Max set a goal of raising $100,000 for St. Baldrick’s and pediatric cancer research, inspiring multitudes to give with his motto, “Two bucks, I mean it!” At only seven years old, Max knew all about giving and helping others. Last Thanksgiving Day, Max’s family learned the pain of saying good-bye to him. They are now carrying on Max’s mission to raise money for pediatric cancer research, and I have no doubt they will surpass Max’s goal.

Now for the “Bouncing Brainola” part…

I admit that I am “fashion challenged,” and have little knowledge of “what is hot.” Those name brands that have sky-high price tags just because they have a Hot Fashion Name puzzle me.

What if…

What if Team Max, Braden’s Hope for Childhood Cancer, B+Foundation (“It’s not a grade, it’s an attitude!”) Alexa’s Pediatric Cancer Foundation, Arms Wide Open, Isaiah Alonso Foundation, et al suddenly became popular high fashion? What if everyone suddenly needed fashion gear that not only covers their body and keeps them warm, but it fights childhood cancer every time it is purchased?

Maybe there is someone in the Hot Fashion Designer Name business who would like to give their name to help raise money for childhood cancer– just by lending their name, their brand.

Like I admitted before, I am fashion challenged; my knowledge in this area is slim to none. Please Mr. or Mrs. Fashion Designer with a BIG NAME, step forward into the light so I may see you and welcome you to the most noble of worlds you can live in… the world of helping children in great need.

Max, Mighty Leader and my Hero

 

 

 

 

 

 

 

 

TwitterLand People, please copy, tweet this, and vote to help raise money for Isaiah Alonso Foundation!

Pls RT & vote #kidsmatter 50k from #pepsirefresh http://t.co/P6M3zFg @The_IAF is #kickasscause@socialvest!

 

 

 

 

 

 

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Dear Philanthropists

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

Dear Philanthropist,

September is Childhood Cancer Awareness Month.

A Gold Ribbon represents childhood cancer.

Rather than quote statistics today, I want to impress upon you the extreme importance of raising awareness for childhood cancer by sharing truth… this truth comes directly from parents who know the nightmare of their own child fighting cancer.

***“But what is needed even more are open eyes, warm hearts, and CURES so that no other child should be damned to die when they are diagnosed with cancer. KIDS GET CANCER TOO! Early detection is essential. Most children are near death before their cancer is diagnosed, because the mind set is that only adults get cancer, so they are never tested. Once diagnosed, there are so few treatments. For some of these children there are NO treatments. This HAS to change. More research dollars need to be going toward the research and development of SAFE treatments for children. And it is those of us who have suffered such unspeakable loss that stand at the front lines. It’s too late for our children but we fight for YOURS. We fight for every child who is currently receiving treatment. We fight for every child who WILL be diagnosed in the future. 46 children are diagnosed with cancer every single day. And every day 7 children leave this life way too early, murdered by a monster that can be stopped. That’s right, it CAN be stopped. But it takes more than prayer. If praying were enough, cancer would be no more. My child would never have suffered. It takes action, it takes all of us joining together and MAKING it happen. It’s time we stopped relying on an invisible being to do all the work for us.  It’s time we all stood up and starting fighting for the lives of our children, our grandchildren, our nieces, our nephews, our cousins… OUR children.”

*** “It is a beast that needs to be stopped, yet no one will because there is no profit in killing this monster. Profit…. while we are burying our children. “

***“I have a feeling this posting is going to upset some people. I am fine with that as long as it isn’t any of the compassionate friends and volunteers who actively support (anonymous) and her family. (You know who you are and this is not directed toward you!) I wrote this because I read every one of the thousands of e-mails and comments that come in through (anonymous) website and Facebook page. For every 1,000 offers of support only a handful of people ever actually get around to doing anything at all. We send a list of a dozen easy ways that people can help yet we rarely ever hear another word. This is frustrating especially considering what (anonymous) is up against now that neuroblastoma cells are growing in her body again. (Yes it is hard to write those words and she isn’t even my child.) So as you read the following parable, please remember that (anonymous) needs you. Not next month or next year but NOW. Also, ask yourself…Are you truly here for (anonymous) and willing to help her or are you just saying that because it makes you feel good?) “

*** “ONE OF THE UGLY TRUTHS…Pediatric cancer research is not only grossly under-funded by the government, it is also largely ignored by private drug companies. Pharmaceutical companies fund over 50 % of adult cancer research, but virtually nothing for kids. They don’t commit resources to childhood cancer research because the adult cancer drug business is viewed as more profitable and less risky to them.”

*** “Wondering when we are going to wake up from this nightmare.  It doesn’t seem real to me at all.  We have gone from sobbing all day to now feeling shock and extreme anger to see what our son is going through.  Our son has been lying in bed for ten days now and with each day this rigid beast has been invading more parts of his body.  We can only sit and wonder what is happening inside his PRECIOUS INNOCENT LITTLE BODY!! “

When I visited Children’s Healthcare of Atlanta on the Children’s Hospitals Hope Tour this summer, they were highly optimistic about breakthroughs in research. Funding for research is what we need!

Research lab at Children's Healthcare of Atlanta

“Do not withhold good from those who deserve it, when it is in your power to act.”

~ Proverbs 3:27

“Withholding good” is unacceptable. There has to be a huge line of philanthropists just waiting with their checkbooks open to give to pediatric cancer research. You don’t need to wait until September to fill in the zeros on those checks!

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Even if our Wallets are Empty

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

I haven’t written much about Twitter since the Twitter Police nearly nabbed me almost a year ago. I was busily tweeting childhood cancer “please help us” tweets when @1ballerina (me!) received a TweetWarning from someone who believed I was Spamming; he threatened to “report me.”

Since then, I have been behaving myself on Twitter, even though I never did find a Twitter Manual to describe to me in detail what is okay and what is not okay. I have met some incredible people through Twitter, and I just never know who or what will be the next surprise. (Happily, I don’t receive Twitter Police threats anymore!)

One wonderful surprise this week, was meeting @AFreeBirdOrg  They describe on their website what they do to help children with cancer—

“Our mission is to empower each bird to fly free.”

A Free Bird aims to provide the opportunity for children diagnosed with cancer to continue to explore their artistic passion, and to give them the strength and power to fight their disease.”

I am grateful for people/organizations that recognize this kind of need and then act upon it! I hope that by sharing my story on http://www.AFreeBird.info that people will understand how crucial it is for children fighting cancer to be able to continue their artistic passions because it truly helps bring healing.

http://afreebirdorganization.tumblr.com/post/8888955643/melindamarchiano

Speaking of Twitter and ways you can help fight childhood cancer by giving just a speck of your time, please tweet this to help raise money for Isaiah Alonso Foundation:

 @The_IAF and @SocialVest for #kickasscause NOW! We can win $ for #childhoodcancer. Please RT!

(Just copy the whole thing, paste it in your What’s Happening Window, and tweet!)

One more Click-of-A-Button way for you to be an advocate for childhood cancer this very day is to vote here for Journey for a Cure:

 http://www.vivint.com/givesbackproject/charity/1262?state=1842d89f75e0db34bd61e511d9b7efd0&code=AQAa8EkA-d9fBg-oXgy86KiGgOcmSU0-ODhjEdU-tjhoHikbMHzT8KoEVqdGMVLzUb9hBw8px2hT_Gr_M5EOW0sITXrEwoxzbvt9kl86yuswNDt501xXuI987DLaF69l2gux5lIrWCCyVLWDL9Z18MhKJNIr2dCgppd_FfGkbqvXEQrm4O34bcGoBScIMEKhG0S_8zZxG59dO2MDTvfDvady

Finally, I want to thank Mr. Tom Nunn for his great idea of asking everyone to pass on a childhood cancer story…

There are so many ways we can be childhood cancer advocates, even if our wallets are empty.

I loved this special doorway for kids at Dell Children's Hospital!

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Suffering is Optional

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

Diffuse Intrinsic Pontine Glioma. DIPG. Today, there is no known cure for DIPG, and only 1 percent of DIPG patients survive more than five years past their diagnosis.

Dr. Gordon Li said, “Thirty years of numerous clinical trials have all failed.”

School-aged children most often get this type of cancer—a tumor that is impossible to surgically remove because it grows tangled in the brain stem.  Chemotherapy does not shrink the tumor and radiation brings only temporary remission.  Researchers at the Stanford University School of Medicine and Lucile Packard Children’s Hospital are starting a phase-1 clinical trial of a vaccine-based treatment and will be enrolling fifteen newly diagnosed patients. This trial is funded by a 1.5 million grant from the National Institutes of Health. Can you imagine a vaccine that will cause the body to produce immune cells that recognize and destroy tumor cells?

Now, this just makes me want to do research even more!

http://www.physorg.com/wire-news/74421171/study-of-vaccine-for-childrens-brain-cancer-seeks-participants.html

­­There are twelve major types of childhood cancer. We need– absolutely need– to find help for children diagnosed with DIPG, and all forms of cancer.  I hope the scientists at Stanford make a huge discovery!

Like many of you, I have been thinking of Ethan.

…  I think of how he lived through his pain. I think of how he loved. I think of how he chose to be Sunshine to everyone whose life he touched.

I read this quote from “Unknown.” It reminds me of Ethan, Kendall, Max, Natalie, Braden, Kate, Jade, Anais, and all children who choose to fight cancer with hearts spilling over with love.

“It’s just pain.”

“Pain is inevitable. Suffering is optional.” ~Unknown  

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Ethan

 

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

Tonight, I want to thank the Jostad family for allowing all of us to be a part of Ethan’s life, even though many of us live far away. I thought about Ethan today, and I thought of his family as they celebrated Ethan’s life.

Below are five anonymous quotes from Ethan’s Facebook page tonight:

***What a beautiful difference one single life has made!!!!!!!!!!

***You will never be forgotten sweet Ethan!!! Much love to you Kim and Chris, thank you for    sharing Ethan’s Celebration of Life with us. You are beautiful, strong, and loving people. My thoughts and prayers are with you daily… and I join you in the fight against childhood cancer!!!

***Thank you all that attended Ethan’s service both in person and Live online. Your presence was appreciated. Over 440 supporters tuned into the live service. Thank you all so very much! RIP Ethan Jostad. We love you!

***Ethan’s celebration was inspiring and touching. I am here for you and will be honored to continue to fight in Ethan’s name for a cure for cancer. Bless you Kim, Chris, Tanned, Ella and all family members.

***Thank you for allowing us all to be a part of your celebration. Ethan still amazes me! I will be thinking of you and keeping you in my heart as the night grows quiet.

 

“As the night grows quiet,” I too will be thinking of Ethan and his family.

 

 Ethan Jostad

 

 

 

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What in the World? Simple.

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

I think about what in the world I am supposed to be doing in this world.

The answer comes to me as plain and simple:

I am here to give glory and honor to God by loving and blessing others.

In this age where life is becoming more and more complex, I suggest we simplify… beginning with, “God is Love,” and “Love is God.”

Our world would have no reason to fight for “Religious Reasons.” There would be no such thing as “believing in God or not believing in God,” because we all have love inside us.

Simple.

God is love.

1 John 4:8

Whoever does not love does not know God, because God is love.

 

So, Miss Melinda Philosopher of the Day, what are you going to do with your love?

I will begin by getting on my knees to give thanks for all the love inside me and for every single person who has given me love. I promise to not waste it; I promise to give it away.

Khadi and I made a friend outside Boston Children's Hospital!

 

I see September on the horizon. My “supposed to be doing” is obvious.

I need to tell everyone that September is Childhood Cancer Awareness Month and get every corporation, business, organization and individual “On Board” for raising money for a cure for pediatric cancer.

Simple.

 

Have you signed this petition?

http://www.thepetitionsite.com/1/CureChildhoodCancer/  

Braden’s Hope Foundation asks us to keep Harley Combs in our thoughts and prayers.

 

 

 

 

 

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Are We Giving It? A Tribute to Ethan Jostad

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

Ethan Taylor Jostad

Sadness.

I feel great sadness today for the world’s loss of this boy. With this link, I want to share Ethan’s brilliant, joyful spirit.

http://www.youtube.com/watch?v=3OcJZ6hk2EQ&NR=1

His made-up song tells a tale that only a child with cancer can tell. It breaks my heart to know that this is what children with cancer rejoice over. It breaks my heart to know that Ethan’s family’s hearts are broken. How they must miss Ethan!

Truth.

I love laughing and joking and being silly. I love finding humor where there is no humor to be found. There is not one speck of humor to be found in the suffering or death of children. We all need to locate the softest part of our hearts and open that part to give everything we have to stop childhood cancer.

*** Childhood cancer is the #1 cause of death by disease in children under 20.

*** When children are diagnosed with cancer, 80% have advanced stages of the disease, compared to 20% in adults. Many children are originally misdiagnosed, which leads to greater suffering and many times, death.

*** One in five children diagnosed with cancer will die. In some forms of childhood cancer, one in five will live.

Today, I encourage every healthy person reading this to consider giving blood. Blood donors save lives. Blood donors save cancer children’s lives. I know because I am one of them. Some generous donor saved my life during cancer treatment… not once, but twice.

We all have something to give. That something might be circulating through your veins right now. With most sincere gratitude, thank you to everyone who gives this treasured gift of life!

I will say it again, “We All Have Something to Give.”

The important question is, “Are We Giving It?”

With love for Ethan Jostad

Remembering Ethan…

 http://www.youtube.com/watch?v=KXVWNRATaiw&feature=player_embedded#at=163

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A Single Flame…

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

What would we ever do without friendships? Sometimes– if we are very fortunate, we find people to enjoy life-long friendships with. My mom has this kind of a friend in Gregg Kaufman. They met in junior high school and they have remained friends forever. I have been the truly appreciative recipient of his friendship through all of my years, including his loving support throughout my cancer battle. A card would show up in our mailbox, or Gregg would show up at our door with fluffy socks and a cozy blanket. He always had words of encouragement, and he showed his care in every way and every chance he would get.

Gregg asked me if I would come to speak to his Rotary Club this past week and to speak last night at the Morro Bay Relay for Life. It felt great to be able to do something for Gregg for a change! The Luminaria Ceremony is my very favorite part of Relay. I thought about the emotional impact I feel each time I attend Relay and wrote a poem to share last night at the Luminaria Ceremony. 

 A Single Flame …

beyond its rippling edges is a vast space no eye can see.

It is here the worst of fears have been confronted,

and tears have been shed in the light of joy, and the dark of sadness.

It is here patience has been shoved again and again,

all while trust clings tightly to its feeble legs.

It is here faith has crumbled before being built anew, and here that existence

has finally peeked out through the crystal clear window of perspective.

It is here that the greatest of battles were fought,

although most will never know of them …

It is here that an army rose up,

coming together for one purpose-one soul.

It is here that loneliness pierced abounding support,

and here that roads twisted, turned, began, and sadly, ended.

That one, single flame is an intricate and delicate story … if you listen quietly you can hear it speak of its life-paths chosen and un-chosen.

When multiplied, the sheer quantity of softly glowing flames

can overwhelm the mind and sink the heart.

There is an innocence in their glow …yet ever-present is an incredible strength,

a quiet strength, often an unknown strength.

To stare at your flame is to feel your life sweep over you in an instant …

emotions flood the heart,

but none can dilute the immense amount of gratitude already there

To stare at a flame that contains not only a story, but a spirit is to be made numb … No words …

And then, a little miracle takes place inside …

every emotion blends and mixes while inability to feel melts away.

And in an instant hope arrives through hopelessness …

and through hope, purpose …purpose for every, single flame

Copyright Melinda Marchiano August 6, 2011

Aquarium at the Entrance to Duke Children's Hospital

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