A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Archive for August, 2011

Gratitude

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

Today, and every day, I wake thinking of the children still fighting their cancer battle.  I think of all the families thrust into the nightmare. My heart breaks for the families who have lost their child.  I share their sorrow and their grief, and I swear I will do everything I can to help stop childhood cancer— stop the suffering and great, great loss.

 As a survivor, there are no Earthly words to express my gratitude for life.  What I know is that it hurts to share in the suffering of others.  I understand why people need to turn away, because the truth is so painful that it strips away every single barnacle off your heart until it is barren and exposed.  This “exposure” is good for us, I think in some ways.  It brings us to the core of who we are and why we are here.  It makes us truly appreciate the love we have in our lives and makes us grateful people. It makes us giving people.

 During treatment, there were times I wondered if I would ever be able to dance again…

 I will always remember exactly how that pain felt—to not be able to dance— and to be truthful, it hurts my heart to even imagine it now.

 Today, as I share the pain of others, I will also rejoice in the extreme gratitude I will always have because I am able to dance!!!!!!!!

 From Grace:

 “The tribal-like music blared, and my body strained to do the movements. I was actually doing it . . . what I thought was entirely impossible . . . I was dancing. On the brink of crying out of joy, I was distracted by the intense concentration it took to make my body do what I begged it to accomplish. Tuesday was modern class, and my bald head had an almost internal glow under the dim lights.

I felt horrible. My vision was fuzzy, my legs were weaker than twigs, and my back moaned with the intense pain of the Neupogen shots. But somehow I kept going. As long as the music was playing, it carried me, supported me. I didn’t think. The music and my spirit guided my body through every single step.

The most amazing feeling on Earth is when I am just dancing, not thinking, stressing, or trying too hard to control the movements. It was happiness, and my love for dance, that moved me and kept me going. Experiencing a new, powerful connection with the melodic beat of the song, I felt like I was in a dream… it was too good to be true. Having virtually no coordination, God moved me, like His little puppet. Somehow managing to make my fragile body appear graceful, I danced in honor of life and Him.”

                        Copyright 2010 Melinda Marchiano Grace: A Child’s Intimate Journey Through Cancer and Recovery

May 2011 Nipomo High School Dance Company

“Held” by Natalie Grant, choreographed by Melinda (I hope you enjoy the dance!)

http://www.youtube.com/watch?v=rozVr1rhh50&feature=related

Have I told you before how much I love dance???????????????? 

Posing by Statue Ballerina on the Children's Hospital Hope Tour

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Sweet Baby Boy Reefie

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

I first learned of Reefie over a year ago. He captured my heart immediately. He needs our help. This brave baby warrior is suffering from Graft vs. host disease.

Each time I write, I try to provide an opportunity for readers to learn more about childhood cancer and to become childhood cancer advocates. Even the click of a button on your computer can help organizations raise money for research. Today, I am reminded how important it is for us to give not only to childhood cancer research, but how important it is for us to dig deep to help individual children in need.

From CureSearch website:

Graft vs. host disease (GVHD) – This occurs only in an allogeneic blood or marrow transplant. Certain types of donor cells, called T cells (or T lymphocytes) react to the patient’s body and recognize it as “foreign.” Medicines are given post-transplant to prevent this complication, but it may occur despite this.

Acute graft vs. host disease – most commonly occurs within 3 months of transplant. The skin, liver, and intestines may be affected. Skin involvement occurs as a red rash that may be itchy or develop blisters. Liver involvement may cause jaundice or elevation of other liver tests. Intestinal involvement may cause very severe, watery diarrhea. Medicines such as steroids are used to treat GVHD and are often successful in controlling it.

Chronic graft vs. host disease – may occur months or even years after the transplant. Most commonly it is a continuation of acute GVHD. Many different parts of the body may be affected. Skin is the most common organ affected – patients may have red, scaly skin or skin that is thickened and tough. There may also be changes in the lining of the mouth, dry eyes, dry mouth, joint stiffness, lung restriction, and difficulty absorbing nutrients from foods. In addition, patients are at risk for infection because of the medications needed to control the GVHD as well as the effect of GVHD upon the immune system.

Rather than tell Reef’s story in my own words, I will let Kendal explain…

A message from Kendal Robinson

“I am raising money for REEF CARNESON AND HIS FAMILY….REEF IS ONE OF GOD’S MIRACLE WARRIORS…HE IS IN REMISSION FROM CANCER, HOWEVER HE FIGHTS ANOTHER DISEASE CAUSING HIM MUCH PAIN…GRAFT VS. HOST DISEASE AND ALSO DEALS WITH OTHER MEDICAL ISSUES.  REEF IS THE ONLY CHILD IN SOUTH AFRICA TO HAVE RECEIVED A BONE MARROW TRANSPLANT JUST BEFORE HIS 1ST BIRTHDAY, AND IS THE YOUNGEST PERSON TO HAVE RECEIVED ONE THUS FAR.  THE DOCTORS THERE DONT KNOW ENOUGH ABOUT GVHD, SO TREATMENT IS NOT AS GOOD AS IT MIGHT BE IN THE USA.  THIS FAMILY HAS BEEN THROUGH SO MUCH THE LAST TWO YEARS, IT’S BEEN NON STOP!!!  REEF IS A FIGHTER…AS THERE HAVE BEEN A FEW TIMES THEY THOUGHT THEY WOULD LOSE HIM….I BELIEVE GOD HAS DIFFERENT PLANS FOR REEF.  ONE CAN ONLY IMAGINE WHAT IT MUST BE LIKE TO STRUGGLE FINANCIALLY, WHILE TRYING TO SAVE YOUR CHILD AT THE SAME TIME…..PLEASE FIND IT IN YOUR HEART TO GIVE TO THIS FAMILY, AS THEY ARE LIKE A FAMILY TO ME….I LOVE THEM DEARLY AND HAVE BECOME VERY CLOSE TO THE ENTIRE FAMILY.  TO READ ABOUT REEF’S STORY…YOU CAN GO TO SAVEBABYREEF.COM  OR ON FB, TYPE IN 1000 CANDLES FOR BABY REEF, THAT WILL GIVE YOU A BETTER OUTLOOK ON THIS FAMILY’S STORY…GOD BLESS AND THANK YOU.

WE NEED YOUR HELP NOW, TO GET REEFIE TO THE USA FOR THE TREATMENT HE SO DESERVES…PLEASE PLEASE FIND IT IN YOUR HEART TO GIVE….THIS FAMILY HAS A VERY LONG JOURNEY TO TRAVEL BEFORE REEF IS ABLE TO BE THE BOY HE SO LONGS TO BE….PLEASE HELP BRING REEF TO THE USA…..

 The money collected will go towards THE MANY MEDICAL NEEDS FOR REEF AND TO HELP THE FAMILY WITH HOUSEHOLD BILLS, FOOD AND LIL’ SISTER MISS PAYTENS NEEDS TOO.”

http://www.gofundme.com/ReefieCarneson-Family

Baby Reef… may the citizens of the world share their blessings by giving all that you need, and may the United States welcome you with wide open, healing arms.

May you receive healing, sweet baby boy.

Let's help Reefie!

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Chemo Talk Across from the Chemo Hut

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

From Grace:

************************

 My entire family was crunched into the small space, sitting on random chairs and stools. Dr. Dan pulled a rickety chair into the circle, his expression instantly setting a somewhat grim tone and feeling in the cramped room. He explained that it was The Chemo Talk, something all of “his kids” must hear. In other words, it was my right as a patient to know of all the possible side effects. With a heavy heart, and a soul of lead, I listened to him recite a long list of potential complications. They were as simple as a headache to as deadly as a heart attack. I was speechless. Looking at my parents and brothers, their somber faces made an eerie sensation tickle my body. They had never looked so serious in all my life, and it was extremely frightening. I stared down at my PICC line. I wanted to go home. I didn’t want to do this. The chemotherapy, my lifesaver, was just as scary as my disease. I had a choice, but I didn’t have a choice. I could either slowly suffocate to death or take on the possibly deadly effects of chemo and hopefully kill the Hodgkin lymphoma. I felt stuck, helpless, and hopeless. I thought that if the mass didn’t kill me, then the chemo would. I was so confused, thinking I had to be the closest to death that I had ever come in order to be saved. It all didn’t make sense to me. The feeling of uncertainty in the air was driving me nuts. I couldn’t help but think, “What am I getting myself into? Is this really necessary? Is this the only way?” And even, “Would I really die if I didn’t do chemo? Would it really kill me?” The answer was, “Yes.” I finally realized, with my pee ready and my newly arrived chemo set, not to mention the 13 x 9 x 8 centimeter mass sitting in my chest, I had to do it. There was no turning back. Peering at Dr. Dan, my mom, and my dad, I felt a sort of thankful anger and frustration for them. They were saving me, but by torturing me and practically killing me. Uh, thanks?

copyright: Melinda Marchiano

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

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If we could stop cancer without cutting, poisoning, or burning…

When people hear the words, “You have cancer,” I wonder which fear is bigger, fear of cancer or  fear of  treatment. 

Arms Wide Open Childhood Cancer Foundation

I love this foundation for their work for less toxic treatments!

This video is titled, “Cut, Poison, Burn”

http://www.youtube.com/watch?v=SCmr2OGmMDQ&feature=youtube_gdata_player

Ronald McDonald House in Phoenix

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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

 

Facebook: Grace: A Child’s Intimate Journey Through Cancer and Recovery

 

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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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