A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

View from the top of the Empire State BuildingOne of the most dumbfounding realities of raising awareness for childhood cancer is the fact that it is difficult—very difficult—to do. This is not because there is any shortage of passionate advocates who are willing to do the daily, hourly, minute by minute work, but because often—far too often—pleas fall upon deaf ears. I can’t help but wonder if the deaf ears are connected directly to disconnected hearts.

Nowhere in the world of childhood cancer advocacy is this more evident right now than the “No” response that multiple childhood cancer organizations have received to their applications to light the Empire State Building gold for a day in September, National Childhood Cancer Awareness Month.

Childhood cancer foundations and families are livid. They began posting reviews on the Empire State Building reviews page, and just as fast as they began posting them, the reviews were censored and removed. Denying all of the applications—I personally know of ten that were properly filed—is unacceptable. Unacceptable. If you would like to add your own review, please do!

https://www.facebook.com/empirestatebuilding?sk=reviews

One of the qualities I love most about people who advocate for children with cancer is their persistence to keep on in the face of great obstacles. A “no” answer means we keep trying.  People who have jumped in to assist us on Twitter…

joel waldman @joelwaldmanFOX5 · Aug 12

You angry the #EmpireStateBuilding won’t help kids with cancer? #EmpireGoGold http://www.dailymail.co.uk/news/article-2723169/Empire-State-Building-owners-light-landmark-blue-lure-Democratic-convention-New-York-wont-honor-childrens-cancer-research.html … 

T-RawwVerified account ‏@Tyga Aug 12

Crazy theyll light it green for TMNT launch but wont go gold 4 childrens cancer research. Tell @EmpireStateBldg do the right thing #GOGOLD

My imagination cannot help but go to the room where the Empire State Building lighting decision-makers were all gathered.

“Well, let’s see what applications we have here. It looks like we have quite a few requesting the same thing. Do we want to light up gold for pediatric cancer for one night in September?”

Then what? What goes through anyone’s mind after that? What reason could there possibly be to say, “No?” What reason?

So far, there have not been any reasons stating why, which makes their dumbfounding decision even harder to swallow. Let’s see, the Empire State Building lit up blue two nights this week to honor the Democratic National Committee. I understand that New York City is coaxing them to hold their convention there, which means millions of dollars will be spent in their city.

If there was a way the Empire State Building could profit financially from raising awareness for pediatric cancer, I wonder if this would be a reason for it to light gold? This truth breaks my heart and makes me mad all at the same time. I seriously doubt that the decision-makers don’t believe pediatric cancer is a worthy cause. So if it is a worthy cause…

If it is a worthy cause, then please, Empire State Building Decision-Makers, light that building GOLD! Awareness really will mean more money for research and more lives saved.

Light it for Cole, Tony Stoddard’s son. Light it for each child who has courageously faced the Childhood Cancer Monster.

They deserve honor. They deserve our respect. They deserve gold everywhere in the month of September.

They don’t have big wallets, but please, Empire State Building, give them a Free Pass to gold.

#EmpireGoGold

 

 

By Guest Blogger, Lee Marchiano

Childhood Cancer Action DaysMelinda has been applying for scholarships this summer. Usually they involve writing an essay from a prompt. This past week, Melinda took this writing prompt to heart– Who would you like to meet and why?


 

This is Melinda’s response…


 

“I sit on a metal bench, embellished and pleasant to the eye but rather uncomfortable.  Well-tended stalks of lilies color my periphery.  Staring down at my folded hands and resting elbows, I ponder how to break the news to the bench companion on my right.

“So, now what made you choose me as the direct connection you would want to have?”

I tighten my lips and keep the response in my head.  Well…I mean, you are the President of the United States.

Obama, attentive, shoots me a crooked smile.  Silence prompts him to speak again, this time in a more presidential tone.

“I was curious to hear more about how you believe our connection will positively influence the American peop—”

“Well honestly, Mr. President, I didn’t actually choose you.”  A moment of offended speechlessness, then his dignity returns.  I continue.

“I’m sorry, I don’t really know why this happened.  I mean, it’s great to meet you and all, but I guess they just assumed that I would want to be connected to the President.”  With apologetic hand gestures, I attempt to let him down easy.  He bites at the air and nods his head.

“Well…um…I’m very sorry for the confusion.”

My next words seem to fly out a bit to forcefully.

“No, no, no, that’s quite alright!”  I tame my waving hands back into my lap.  Out of the corner of my eye, I can see him settle back further, cross his legs, and stretch out his arm on the bit of bench between us.  His chin is upturned, his eyes darting back and forth.  Oh great, I just insulted the President.  I lean on the armrest—my finger a mustache as my thumb holds the weight of my head.  Hopeless for a good first impression, I find myself blurting out words once again.

“Well, I’m sure you’re a very busy man…have to get back to your office and all.  Um, I know there’s a lot goin’ on…the Middle East…all that.”  By now I’m twisting the knife in my own stab wound.  “And I’m sure it takes a lot out of you being President and all…I’m sure you could use a…a nap or someth—”

“You know, I appreciate that,” he now turns to me contemplatively.  “But I’d much rather you tell me who you did choose and why.”

Silenced, my eyes widen in doubt.  A reassuring and expectant nod encourages me to gather my words.

“Well, you see Mr. President, I was hoping to get connected with Dr. Harold Varmus, you might know him…maybe have had a couple meetings with him, actually.  He’s a Nobel Prize winning scientist for his work on the discovery of the cellular origin of retroviral oncogenes.  I’m not exactly sure what that means, but basically, he’s a very respectable man.  He’s a co-chair of the President’s Council of Advisors on Science and Technology as well—perhaps he’s given you some advising.  Anyways, he was born in New York, followed in his dad’s footsteps to become a doctor, and then even got his graduate degree in English from Harvard.  He’s been faculty at UCSF, and has spent years in laboratories prodding little cells trying to figure out how you and I both work.  Basically, he’s famous for being awesomely smart.  But that isn’t the reason I want to be connected with him.  You see, Mr. President, back in December 2007, a softball-sized tumor in my chest cavity was diagnosed as Hodgkin lymphoma.  It had taken five months to figure it out, and that meant more intense chemotherapy as a result.  The following six months was a blur of four rounds of chemo and three weeks of daily radiation.  I can remember my oncologist packing my whole family into a cramped clinic room to have ‘the chemo talk’.  Basically, it was in my patient rights to know of all the potential side effects, whether I wanted to or not.  Words jumped out—heart attack, kidney failure.  Suddenly just puking my brains out didn’t sound so bad, you know?  The worst part was that I had no choice but to grit my teeth and just step forward.  After the beast of treatment, I thought I was done, but I learned quickly that cancer is not over post-cancer.  A three-year eating disorder due to digestive damage, two trips to the ER in dehydration shock, and multiple visits to various specialists gave me insight into the lasting effects of treatment.  And so now I find myself here, grateful for the research that has been done in order for me to survive, but still haunted daily by physical limitations due to the toxicity of the treatment.  I began to hear the stories of other kids—ones that were diagnosed on such and such date and died four months later because there were no treatments for them.  None.  Not a single thing that could be done or even tried.  Natural entrance into the childhood cancer community has made me aware of some devastating statistics: it’s the leading cause of death by disease in children, nearly 16,000 kids will be diagnosed this year in the United States, 80% of kids have advanced stages when diagnosed as compared to 20% in adults, and over 2/3 of survivors will have life-threatening effects.  But perhaps one of the most alarming to me, Mr. President, was that all of childhood cancer—made up of 100 different types—receives a pitiful 4% of funding from the National Cancer Institute.  And even while adult cancers are getting 96% of funding, they are also receiving a huge chunk of support from pharmaceutical and other large corporations in the private sector.  These commercial giants don’t support childhood cancer because it’s ‘not profitable'; they say that it’s rare.  But 7 kids dying per day…that…that isn’t ‘rare’ to me.  It’s amazing…I’ve seen what has been done with breast cancer, for example, and the progress that has been made because of research.  Pink ribbons are everywhere—not too many people know what a gold ribbon represents.  Every penny childhood cancer receives for research, clinical trials, etc. comes from the NCI and a little army of cancer families and foundations having bake sales and wine auctions.  That just means that childhood cancer deserves more of the NCI’s budget.  This is where Dr. Varmus comes in—he’s the director of the National Cancer Institute…has been for four years now.  He’s extremely influential in the NCI’s decision of how much money is appropriated to various cancers.  I’d love to sit down with Dr. Varmus, share my story and, perhaps, the stories of the other kids and families I’ve crossed paths with.  I’d love to try to express what my heart feels toward childhood cancer and hope that he can take in and have some of it in his own.  I would like to tell him of the incredible, tangible difference that we could make together—for kids pulled out of trials because of lack of resources…for kids terminal at diagnosis because of no known treatments…for survivors that struggle with quality of life and wonder if the fight was worth it.  So, while it is wonderful to meet you, Mr. President, the connection that I believe can have the largest and most influential impact is one with Dr. Varmus.”

I’m only slightly apologetic for my passionate monologue as I once again pacify my gesturing hands.  But then again, he did ask.  Taking a moment, he rubs his chin to aid in processing my swarming words.  He takes a long breath.

“Um…actually, I appointed Mr. Varmus.  I, I know him quite well.”

My hair bobs as I whip my head.  It cocks with inquiry.  Obama carries on calmly.

“Yes, it is one of my many duties as, um, President of the United States, to appoint these kind of people.”  He is now the one turning the air with his hands.

“You want to meet him now?  Stop by his office?”  I’m certain his eyebrows can’t go much higher.  Stunned, it seems I barely get out a nod before we lift off the bench and begin to walk.  Wow, I’m going to meet Dr. Harold Varmus.  Right now.  I’m going to know him.  Imagine what we can do.  My heart does a little dance within me.  Look out, childhood cancer, your days are numbered.”

~Copyright by Melinda Marchiano  

IMG_2479 


 

Something tells me that this imaginary meeting between Melinda and Dr. Harold Varmus may not be imaginary one day. I hope that “one day” comes soon!

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“We Have Just One Wish… #EndChildhoodCancer “

                                                                      ~Hyundai Hope on Wheels

http://tinyurl.com/yc9uo8x 

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Every 36 minutes, one more child in the United States is diagnosed with cancer. Each year there are 15,000 new childhood cancer patients, and there are over 40,000 children who are currently in treatment. Two out of three children who survive will suffer lifelong effects caused from their cancer treatments. Our children need—absolutely need— politicians, celebrities, businesses, sports organizations, essentially everyone who walks the Earth and breathes, to act to #EndChildhoodCancer We are all called to be Gold Spokes in the Wheel speeding its way to cures.

One of the stellar “Gold Spokes” in the “Wheel” on its way to end childhood cancer is Hyundai. On this day, Hyundai is kicking off their 16th annual Hyundai Hope on Wheels program. Over the past 16 years, they have raised over $86 million to fight pediatric cancer. Yes, $86 million! Michelle Williams has recently joined Hyundai to help them in their wish to #EndChildhoodCancer

On April 9th of this year, Hyundai Hope on Wheels announced a $2 million grant they awarded to fund Children’s Oncology Group’s Project:EveryChild. This grant will allow doctors and researchers access to thousands of cancer specimens in an enormous database at the Hyundai COG Biorepository.

http://www.fenderbender.com/FenderBender/April-2014/Hyundai-Awards-2-million-Cancer-Research-Grant/

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“Hyundai’s generous support to Project:EveryChild will make a significant difference in our ongoing battle against childhood cancer,”

“This crucial funding will ensure that every child diagnosed with cancer in the U.S. will be eligible to participate in and benefit from the advances in research from Project:EveryChild, regardless of the rarity of the type of cancer.”

                                                                                        ~Dr. Peter Adamson

                                                Chairman of the Children’s Oncology Group

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Now that we see how this automobile manufacturer, Hyundai, has huge ambitions to help our kids, I HOPE more and more consumers will turn their attention and their dollars to show their appreciation to Hyundai.

Thank you, Hyundai Hope on Wheels! Very best wishes to youth ambassadors, Ashley Burnette and Kenny Thomas!

What’s in YOUR garage?

Kenneth and Ashley National Youth Ambassadors for Hyundai Hope on Wheels

Photo shared from Hope on Wheels Twitter Page  @hopeonwheels https://twitter.com/hopeonwheels

Guest blogger: Lee Marchiano

 

 

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Please keep Neuroblastoma Warrior Bryson in your thoughts and prayers! ~Suzanne Shelpman

Suzanne Shelpman is one of Melinda’s Facebook friends. I notice Melinda and Suzanne have 233 “friends” in common. Suzanne is not a high school friend, or a Pepperdine friend; Suzanne is a caring, concerned advocate for children with cancer. Suzanne keeps track of countless CaringBridge sites  and Facebook pages where families post the latest updates on their child’s treatments, scans, and health reports. She follows the journeys of many children, and she writes beautiful posts on her Facebook page so that others can join her in caring, sharing, and praying. She saves all year long so she can donate to support friends who are raising money for childhood cancer research.

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“It snowed last night, so am headed over for a session of Spin cycling for Run for the White House for Childhood Cancer Awareness 2014. After I finish, it is my night to serve dinner to my unsheltered homeless friends.”

“I have several more kids’ updates and will post when I get back later tonight.”

                                                                            ~Suzanne Shelpman

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This is one of Suzanne’s latest updates about Carly, who we have all been praying for. And please remember Bryson!

“Warrior Carly who is battling a secondary cancer caused by the harsh treatment during her initial diagnosis will have a stem cell transplant tomorrow (Tuesday). Please keep her in your thoughts and prayers and remember her generous donor.”

                                                                           ~Suzanne Shelpman

https://www.facebook.com/groups/prayforcarlytomlinson/

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Not everyone can create and run a foundation, like so many childhood cancer families have successfully accomplished. Not everyone can create an Emmy Award-winning childhood cancer documentary, like Mike Gillette. Not everyone can go after the entire United States to light it GOLD, like Tony Stoddard. Not everyone can shave their head in support of their cancer-fighting friend, like Kamryn Renfro did for Delaney Clements. Likewise, not everyone can do what Suzanne so lovingly does each and every day of her life. She uses her life to help better the lives of children who are suffering.

Each one of us has something unique we can give to children fighting cancer. Each gift is like a Gold Spoke in a Wheel. All of these Golden Spokes are equally important and equally necessary to keep the Wheel moving forward. The Wheel must move quickly forward, because we have children’s lives to save.

My deepest thanks to Suzanne. Your sincere love is inspiring, and it encourages all of us to look inside to find our very best selves.

My deep thanks to all of you Gold Spokes out there who keep loving, giving, and sacrificing for the goal of ending childhood cancer.

Praying for Carly Tomlinson

Praying for Carly Tomlinson

Guest Blogger: Lee Marchiano

Taylor SwiftThe Truth 365 is launching a campaign to invite Taylor Swift to be an official celebrity spokesperson for children with cancer. They have been communicating with Taylor’s “team” and believe she may consider helping out. Do you remember the song she wrote for Ronan?

http://www.youtube.com/watch?v=_nVBsDP5DoM&feature=kp

Ronan Thompson was diagnosed as a toddler with stage-four neuroblastoma– cancer stole him away just eight short months later.  Maya Thompson blogged about her son’s illness, and her moving story found its way to Taylor. Maya received a phone call from Taylor, telling her she wrote a song for Ronan.

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“I was a blubbering mess telling her how much this meant to me as she was helping me keep your memory alive and helping me to do amazing things. How if I had to pick my dream person to be tied to your name, it would be her because she is full of so much pure goodness, just like you.”

                                                                        ~Maya Thompson, Ronan’s mommy

                                                                           www.rockstarronan.com

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Dear, dear Mike Gillette from The Truth 365 gives us these details on how we can all work together to make this happen:

Announcing the ‪#‎ThankYouTaylor Campaign!

“As a way to thank Taylor Swift for her years of kindness toward kids with cancer we are launching a social media campaign called #ThankYouTaylor.

Here’s how you can participate:

Step 1. Take a photo with a message for Taylor that includes the hashtags #ThankYouTaylor and #‎thetruth365film. Photos can be of individuals, groups, pets or anything that you can think of. Children fighting cancer are strongly encouraged to participate.

Step 2. Upload it to Facebook, Twitter or Instagram

Step 3. Be sure to tag it with the hashtags #ThankYouTaylor and #thetruth365film so that we can find your image.

We will then then choose 1,000 images and print a 36 sq. ft. wall mural for Taylor which she may accept or donate to her favorite charity. The mural will be designed as a mosaic made up of all of the images.”

 Ronan

 The inspiration for Taylor’s song, Ronan Thompson

 

Phoenix Children's Hospital, Make-A-Wish Hope Tour

Phoenix Children’s Hospital, Make-A-Wish Hope Tour

Today, April 10th, is National Siblings Day. This annual celebration honors the relationships of brothers and sisters. Although Siblings Day is not recognized federally like Father’s Day and Mother’s Day, 39 of our states have official proclamations recognizing Siblings Day. Claudia Evart created the concept for the holiday in 1997, to honor the memory of her sister and brother.

Siblings of kids with cancer have an enormous burden upon them. They live with fear of losing their brother or sister. They watch their sibling suffer in ways that children should never have to witness. They step to the background so their parents can attend to life-threatening issues and provide care  that steals all of their time. They continue with their so-called “normal” life while their sibling and at least one parent are away at the hospital. They try their best to bring joy to their family when their family is falling apart. They sit with their ill sibling just to be with them. To any sick child, this is the greatest of all gifts… time. These kids are SUPER!

Today, Alex’s Lemonade Stand announced it will be working with the organization SuperSibs! in the near future, to provide support for siblings of children fighting cancer.

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From April 2014 Newsletter from Alex’s Lemonade Stand:

“ALSF is going to join forces SuperSibs!, an organization that has worked to support siblings of children with cancer since 2002. SuperSibs! was established when Melanie Goldish’s older son was diagnosed with leukemia, and she was unable to find support services as her younger son struggled to cope. Goldish hoped to fill that void, creating SuperSibs! to focus on the well-being of siblings who may experience fear and isolation as their brother or sister fights childhood cancer.”

To view this new program on their website: www.AlexsLemonade.org/supersibs   

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Today on Twitter, Beads of Courage tweeted a photo of their Sibling Program Guide for kids at Phoenix Children’s Hospital.

https://twitter.com/beadsofcourage/status/454390377772875776/photo/1

Embedded image permalink

Tweet: “This is the Sibling Program Guide for kids at @PhxChildrens with a brother or sister in the @beadsofcourage program.”

Do you know a sibling of a childhood cancer patient? They need us. They need our time. We need to show them they are extremely important. Thank you to Alex’s Lemonade Stand, SuperSibs!, Beads of Courage, and all of you out there taking care of the kids who are taking care of siblings fighting childhood cancer.

Go SuperSib Zach Hofen….. Z-Force!!!

 

David Alexander, Guinness Record-Holding Barber

David Alexander, Guinness Record-Holding Barber

What a great day it is Today! Childhood cancer advocate and barber, David Alexander, teamed with St. Baldrick’s to break the record of the most heads shaved in one hour by one barber. In the past, David has raised over $600,000 for pediatric cancer research. I read that he even has a St. Baldrick’s tattoo on his chest!  Today, David shaved 73 heads of hair back to their shiny domes live on the Today Show to beat the world record– with eleven seconds to spare. This record shave is a huge thrill for everyone working to end childhood cancer. Hearty congratulations and thank you, David!

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“I think we’ve established that Bald is Beautiful!” ~ Savannah Guthrie

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Hearty thanks go to all the volunteer “shavees”who have formed teams, raised money and awareness, and traveled to leave your hair behind. I’m thankful St. Baldrick’s sent out an email to alert us about what would transpire this morning! As I tuned in, feelings of excitement rushed through my heart. I was happy to see St. Baldrick’s on the Today Show, because awareness is extremely important! I was happy to know that a lot of money was being raised for childhood cancer research. I was routing for David to break the record. And then…

St. Baldricks Record Today Show Shave 003

The camera turned to the very first person who would become bald. I recognized her immediately as Susan Heard. Memories of her son, David, and his origami cranes filled my mind, then my heart flooded with sorrow. My eyes filled with tears. I could see the celebratory mood of everyone in the crowd, but my eyes would not leave Susan’s eyes. As only another mom could, I felt I could see in her eyes what she was feeling at that moment. It was all for David. It was all for love.

I lost it.

Viewers of the Today Show this morning got a short glimpse into the world of what “lengths” childhood cancer advocates are willing to go to in order to make a brighter future. Record-breaking excitement, hair flying to the ground, and Today Show appearances are great. What is beyond great is that people like Susan Heard are choosing to use their pain to lead all of us.

Susan Heard ~ David’s Warriors

http://www.stbaldricks.org/teams/mypage/94079/2014

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“Bald never looked so beautiful.”

                                                          ~Al Roker

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Six Year-Old Joseph Maroney one the Today Show 4 -9 -2014

Six Year-Old Joseph Maroney on the Today Show 4 -9 -2014

 

Would you like to make a donation on this record-setting event & help fund childhood cancer research?

http://bit.ly/Donate-to-the-record-breaking-event

 http://www.today.com/news/close-shave-barber-sets-guinness-world-record-cancer-charity-2D79506021

http://www.stbaldricks.org/

https://www.facebook.com/46Mommas

https://www.facebook.com/StBaldricksFoundation
Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

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