A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

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

“A man never stands as tall as when he kneels to help a child.” ~ Abraham Lincoln

 “If our American way of life fails the child, it fails us all. ~Pearl S. Buck

“Children are one third of our population and all of our future.”  ~Select Panel for the Promotion of Child Health, 1981

“Children are the world’s most valuable resource and its best hope for the future.” ~John Fitzgerald Kennedy

“It is easier to build strong children than to repair broken men.” ~ Frederick Douglass

In recognizing this month of September as Childhood Cancer Awareness Month, I am happy to share these quotes about children.  Today, and every day (believe me!!!!!) I want to give an outpouring of loving thanks to the people who work with and treat childhood cancer patients.  I have heard people say over and over again, “How can anyone do that… work with very sick children?” Right now, at this very moment, I want to express my sincere gratitude to everyone who “is able” to work with sick kids. Thank you for choosing the path you have chosen so that I – and many other children—are able to be here today.

I want to personally thank Dr. Dan, Dr. Gonzalez, Dr. A., Dr. Keshen, Dr. Pickert, and the entire staff at Cottage Hospital.

When I imagine the sacrifice it takes, not only to achieve the needed education, but to live each day with the great emotional impact of their occupations, my respect and admiration grows for everyone who has stepped into the “ring” of fighting childhood cancer.  What would we do if no one sacrificed?

The quotes above remind us that “our” children are more than worth sacrificing for. Giving now to help stop childhood cancer will certainly act as an “Insurance Policy” for our children in the future. You don’t need to get a medical degree, or work in a hospital, or even work with sick children… we all have something to give. 

Sharing from Max’s Facebook page:

600 CHILDREN get DX with cANCER a day 365 days a year. 200 children die from it each day 365 days a year. Is your child safe? $$ = Protection for children. Please buy a policy from www.curesearch.orgwww.stbaldricks.org orwww.alexslemonade.org and treat your children’s future like you would your auto. Are your Children’s future in good hands? No restrictions apply, valid worldwide. STOP CHILDHOOD cANCER!

“The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be, another child like him.” ~ Pablo Casals

46-7 Stop Childhood cancer

 

The Blanket Fairy

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

I want to thank Britta Fleeson for the very first nomination– The Blanket Fairy— for the Big Heart Red Carpet Award for this National Childhood Cancer Awareness Month of September.  I find this fascinating… it is just as I had imagined… The Blanket Fairy would never show up to any award ceremony because he/she operates anonymously.  I will admit that I have had the extreme honor and pleasure of meeting The Blanket Fairy, but I have sworn to keep the identity of this loving and talented person a secret.

It’s okay Blanket Fairy— it just makes all of us love you even more. Would you like to know what The Blanket Fairy does? He/she donates soft blankets of love to children fighting pediatric cancer.  He/she follows blogs, Facebook and sites like CaringBridge to notice if a certain child needs a lift and then contacts that child’s parents about a gift that their child would enjoy. Warm, soft blankets played a huge role in my healing!!!  To receive something like this must be a wonderful moment that lasts and lasts for a child with cancer.

What a perfect nomination!

Would you like to volunteer to help The Blanket Fairy in  some way?

http://theblanketfairy.weebly.com/volunteer-fairies.html

Do you have more nominations?

Everyone have their gold ribbons on?

Just checking.

Love you Braden!

For anyone asking me, “Melinda, why the heck won’t you be still about all this childhood cancer stuff?”   I can’t.  You see, each day, children die from cancer.  It’s horrifying to me that it takes so long for childhood cancers to be detected.  It’s unfathomable to try to comprehend why childhood cancer receives so little funding in comparison with adult cancers.  Less than 2% of federal funding for cancer research goes to childhood cancer research. This first video does an excellent job of helping you understand this point; the second one reminds us all that time is short, that life is precious, that we all have to give sacrificially until we find a cure.  Please give generously from your resources.

The Pie: Childhood Cancer

http://www.youtube.com/watch?v=fjp1es04qgE&sns=fb

Michael Tells it as it is

http://www.youtube.com/watch?v=PW20UOk4sqU&feature=share

 

Big Heart Red Carpet Awards

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

Have you ever noticed (I’m not sure that it’s possible not to notice!) the headlines on the magazines available for purchase at our grocery store checkout stands? Right along with the latest headlines of the latest happenings of celebrities, there are captions commenting on how excellent it is that someone has lost weight, or how dreadful it is that someone has packed it on.

I have a hard time managing my brain when I look at those. I have a hard time managing my heart when I realize that we, as a society, value what our outer shells look like much more than we value the wholeness of our hearts. Is it just me, or is something sickening and wrong with this? I am not suggesting we discontinue bathing and grooming. I just think that The Grand Prize of Life cannot possibly lie in becoming The Thinnest, The Most Beautiful, or even The Most Famous.

I think the Grand Prize of Life lies much deeper… down in the deepest part of us.

Will you please help me look for winners of The First Annual Childhood Cancer Awareness Month Big Heart Red Carpet Awards?

I am looking for foundations, businesses, and individuals who have opened their hearts (wallets are appreciated, but certainly not necessary!) to fighting childhood cancer.

melinda@melindamarchiano.com

It’s way past time we start giving awards where they are truly deserved.

Know what’s funny…. if there were an award ceremony for this, no one would show up. These people already have their “prize.” They have helped children with cancer. They don’t need or want accolades or praise.

Those aren’t The Prize.

I leave you with —reminders of the reality of childhood cancer…

Andrew McDonough

Written by Andrew’s family…

 This B+ Hero is Andrew – the reason we fight so hard for a cure. Andrew was diagnosed with Leukemia (AML) on January 29, 2007, just 48 hours after playing 4 soccer games. His body went into septic shock and his heart stopped. Doctors said he wouldn’t live through the night, but he proved them wrong. He underwent nearly 50 surgical procedures, 4 strokes, multiple hemorrhages and a brain aneurysm that forced him to be airlifted to Jefferson Hospital in Philadelphia for emergency brain surgery. We were told he was the sickest child the hospital had ever treated. After 167 days in the hospital, Andrew passed away on July 14, 2007. www.caringbridge.org/visit/andrewmcdonough

 

46/7 is real... are you?

Written by Carla Mota…

… like always up all night fearing for my daughter… indescribable how it is to live fearing that your daughter might die… only someone who walks in my shoes will truly know the heartbreak I live with and for all of you who don’t, get on your knees and thank God NOW and beg him you never find out !!!

Update on Reefie... he's on his way to the U.S. today!

Written by Randy Hinton…

“If you force radiation ,steroids, and chemo on a condemned prisoner without his permission he can SUE THE STATE AND WIN. If you do it to a child it is called “Best medicine available”.

Praise the Lord for Remission

Written by Nikki Katz of Teddy Bear Cancer Foundation…

“Teddy Bear Cancer Foundation is currently working with a family whose three year old daughter is battling a Wilms Tumor. The family recently had to move out of their home into a small two bedroom apartment and have no furniture. If you or someone you know have any of the following items and wish to donate them please contact Nikki at 308-9941 or via e-mail.

Be sure to share this e-mail with friends, family and coworkers.

Queen bed, sheets, comforter, two pillows & pillow cases

Twin bunk bed, sheets, comforter, three pillows & pillow cases

One Twin Bed mattress

Sheets and comforter for a toddler bed

Small couch and chair

Dining room table with six chairs (not big)

TV

 DVD player

Standing lamp or two

Side Table for table lamp

Bookshelf

Thank you for your time and consideration.”

 

Reality check to all of America!

I will be awaiting your votes for the True and Most Deserving Winners in This Life.

 

 

 

 

Think About the Unthinkable

 

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

Welcome to the month of September.

This is National Childhood Cancer Awareness Month. 

“The White House announced today that September has been declared National Childhood Cancer Awareness Month.

President Barack Obama made the proclamation to highlight the recent successes in treating pediatric cancer and to underscore the challenges still facing young people dealing with life-threatening diseases.”

From an article in Hem/Onc Today, dated September 2, 2011 (today!)

http://www.hemonctoday.com/article.aspx?rid=87148

My friends, I ask you to continue your fight against childhood cancer. For those of you who may read these words who have never looked to face the world of childhood cancer, I ask you to turn and look.

What I want you to see most of all is not a “what,” but many “who’s.”

The children…

It is our serious responsibility to care for the young in our society. If each and every adult knew that tomorrow, 46 random U. S. children will be “chosen” as cancer victims, I don’t see how we can live on without swift, determined action. I don’t see how we can look at these faces and not think about how their lives matter. The dearest way we can show  that their lives matter is to make a difference for the children of the future.

Breanna

Thank you to everyone who is building the Childhood cancer War Machine for your hours of dedication, sweat, and tears. You know exactly who you are.

I do too.

For everyone else, please bring yourself to think about what is truly “Unthinkable.”

Children do get cancer.

If we know the truth, well…I guess we each have to think about it, and then think about what part we each play in that truth.

Without a doubt, we are all called to action.

Max...

 

“Unthinkable” by Alicia Keyes (played by Melinda in my Team Max Shirt (which by the way is a fashion “must have!”)

http://www.youtube.com/watch?v=pDI8FC_kMm8

Go ahead… think about the unthinkable… 

Beware, you will fall in love with the children, over and over again.

Fair warning.

 

 

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

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!

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

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

 

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…

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!