A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘National Childhood Cancer Awareness Month’

A Night of Golden Lights at the White House- CurefestDC

Curefest 2014 252After the Curefest DC Welcome Event at Nationals Stadium, the attendees all headed to President’s Park across the street from the front of the White House. I never would have arrived without the help of Karla, who introduced me to my very first ride on the Metro. Since I live in an area where there are rolling hills, oak trees, strawberry fields, and cows grazing, this was an eye-opening city experience for me. I know it’s normal for people who live in DC and other cities to travel on underground railways, but I admit that my usual Podunk surroundings make it so I am utterly amazed by the setting and all the people! Thanks Karla– I would still be standing in the station with my mouth open.

Is it any surprise that A Night of Golden Lights is the brainchild of none-other-than Tony Stoddard? (A Day of Yellow and Gold to Fight Childhood CancerOur time together at this event was exceptional. I wish I knew the name of the singing group who sang “If I die Young” — it was beautiful! I do have this photo of the singers with Ellyn Miller (Smashing Walnuts Foundation) and her son.

Curefest 2014 267

 

Mike Gillette, Emmy Award-Winning Filmmaker from The Truth 365, helped organize the evening’s events with Tony Stoddard. Thank you, Mike and Tony, for your never-ending passion and energy for the kids.

Curefest 2014 268

Curefest 2014 377

One of the most meaningful moments for me of Curefest DC came next. Tony began by telling us about his son, Cole. Cole died from Stage 4 Neuroblastoma. I highly recommend reading this article Tony wrote for Cancer Knowledge Network, telling his story. https://cancerkn.com/promise-son/ Being present to hear Tony tell his story is something I will always carry inside me, and what followed next will stay with me forever. Parents and brothers and sisters took the stage to tell their stories. We need this. Giving these people a microphone and a caring, compassionate audience was beautiful. Each person who shared seemed comfortable that they were talking to a group who truly wanted to listen. We were all “family” on this night. We were all one. We were not separate. We were not alone.

Curefest 2014 317

Curefest 2014 338

Curefest 2014 367

Curefest 2014 326

This tender and precious time of sharing set the tone for what we would do next… walk to the front of the White House.

Curefest 2014 395

Slowly, almost somberly, the crowd began walking. I walked behind Tony, imagining what must be going through his mind and his heart. It was a time of reflection as our group neared our destination. If someone dropped a pin, we all would have heard it. It was a time of honor. It was a time of respect. It was a time of memory. It was a time of conviction that we need to do all we can to see that the pain and suffering present inside so many would not go without acknowledgement– would not wither without action or purpose.

Curefest 2014 405

As we lit and lifted our golden lights together, we lifted our voices to sing, “Amazing Grace.” We sang the first verse through three times in a row. (Everyone chuckled when they announced we would do this because it is the only verse everyone knows!) A Night of Golden Lights at the White House was an evening I will always remember. I was wishing our president was not vacationing, so he and his family could look out their window and see hope for children with cancer. My next thought was, “It doesn’t matter.” What matters is that all of these people gathered with One Voice for our kids. 

To be among these people is life-changing. Each person I met left a piece of their heart in mine. I hope I was able to leave them a warm piece of my heart as well. 

Night of Golden Lights White House

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

Advertisements

Curefest DC Welcome Event at Nationals Stadium

National Angel QuiltIf you missed CurefestDC this year, you can always begin planning for next year’s event that will take place on September 19th and 20th, 2015. After attending this year, I find it is a must for me to begin planning on attending next year as well.

The Welcome Event at Nationals Stadium was a wonderful time of entertainment, fun games, great food, and treasured times meeting others. Thank you to Arms Wide Open Childhood Cancer Foundation, Stillbrave Foundation, Smashing Walnuts Foundation, Children’s National, and Kyle’s Kamp for sponsoring the event! Families were decked out in their foundation and team support t-shirts. As we entered the stadium for the CurefestDC event check-in, the National Angel Quilt was gorgeously displayed. I had read about the emotional impact the quilt has on those who see it for the first time. I felt I was “ready.” There is nothing that can prepare one for this. On first glance, it is massive. The sheer size of the quilt speaks volumes about how many kids have suffered and died from childhood cancer. Seeing the children’s faces and reading their birth and death dates… 

At first, I felt I couldn’t breathe through the huge lump in my throat. Then, I had to stand back against the wall. As my body finally breathed in a breath, it came back out of me in a whimper. The whimper took over. It felt like I breathed in each one of those children’s souls and breathed out their suffering. I stood back to weep, not caring who saw me, not caring what anyone thought. My thoughts were, “This is why we are here. This is why we all need to step up for research for cures.”

National Angel Quilt

National Angel Quilt

Capitol Building

The Welcome Event was super-kid-friendly. Kids enjoyed a bounce house and lots of crafts and games. For some reason, they would not let me in the bounce house (ha ha!) This meant I needed to go back to the food table and eat an icing-topped cookie that looked like a baseball. Yum! The entertainment was spectacular; I was happy to see and hear Nicole Ricken perform again and to see her sister, Alyssa as well.

Nicole Ricken performing at CurefestDC 2014 Welcome Event

Nicole Ricken performing at CurefestDC 2014 Welcome Event

The fun went on and on, with Tattoo Tom Mitchell from Stillbrave Foundation spreading joy and tattoos. I am officially tagging Tom as a Kid-Magnet!

Tatto Tom spreading joy and tattoos

Tattoo Tom spreading joy and tattoos

“One day, the whole world will feel the touch of gold.”

~Dr. Irene Koesters

Curefest Welcome Event t-shirt

Curefest Welcome Event  — One Voice for Childhood Cancer

The very best thing about the Welcome Event? 

Voices for childhood cancer combined with action against childhood cancer.

Know what? This is a deadly combination for childhood cancer. 

Keep it up.

Curefest 2014 180

Guest Blogger: Lee Marchiano

 

 

 

 

 

 

 

 

 

 

 

 

 

Empire State Building, Why Won’t You Light Gold for 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

Mr. Jon Lester, Please Meet Mr. Tony Stoddard. Light Major League Baseball Gold for September

 

Red Sox Pitcher Jon Lester

Red Sox Pitcher Jon Lester

There was a story in the news last week that grabbed my attention because our family is what you call “a baseball family.” Melinda’s brothers played Little League ball, her dad coached, and she sat in the stands for countless games, cheering her brothers on. My first trip to a major league baseball game was to see the Red Sox play at Fenway Park in Boston in the late 1960’s. Gosh, do I ever I remember the excitement of seeing the Green Monster and my favorite player, Yaz—Carl Yaztremski. So, when I read last week that Boston Red Sox pitcher, Jon Lester, is raising money and awareness for pediatric cancer, my Red Sox Fan Meter went sky high.
Jon Lester was diagnosed with non-Hodkins Lymphoma in 2006; now he and a few of his teammates, along with players from other teams, are working on a project called “Never Quit” to encourage children battling cancer. For many children, meeting a major league ballplayer would be the thrill of a lifetime. For children in cancer treatment to be able to meet Jon- a cancer survivor himself- has got to be highly inspirational and even healing.

*********************************************************************************************************************************************************************
“Lester has big plans to expand the program, in Boston and beyond. He hopes to bring in players from other sports to help, especially in cities that don’t have baseball teams.”
                                                                                                                                                                      ~Don Fair, coordinating producer of Fox News’ Los Angeles bureau

*********************************************************************************************************************************************************************
Is there anyone else thinking what I am thinking? I think Mr. Jon Lester needs to meet Mr. Tony Stoddard. In case you missed yesterday’s post about what Tony Stoddard is doing to help children with cancer, you must know!
https://gracemelinda.com/2014/04/07/a-day-of-yellow-and-gold-to-fight-childhood-cancer-tony-and-cole/
Every time I hear of someone using their lives to help children with cancer, it inspires me and encourages me to do the same. Whenever I join with others who feel strongly about the importance of making a change in the world of childhood cancer, the results of the outcome of our work jumps exponentially. This is what will happen when Jon and Tony meet. Tony, I think Jon might know one or two people in the Front Office at Fenway Park. I think Jon might know a bit about how one would go about Lighting Major League Baseball Stadiums yellow and gold for Childhood Cancer Awareness Month in September.
And the best news of all, Tony, I will bet—I will double-down—that Jon has a heart that is willing to help you make this happen. Jon, will you please help honor these warriors? Will you please help Tony spread awareness that will lead to funding for cures? From the work you have already done, you’ve demonstrated you feel our children are worth every bit of effort and sacrifice. Thank you for all you are doing, Jon, and thank you for your consideration to step up to the plate to accomplish even more… for Tony… for Cole… for all the kids who should never have to face the Monster. The only Monster I want our children to face is that big Green One I marveled at as a kid at Fenway Park!

http://www.foxnews.com/sports/2014/03/31/opening-day-ace-jon-lester-hopes-to-shut-out-childhood-cancer/?intcmp=latestnews

Tony and Cole

Tony and Cole

Guest Blogger: Lee Marchiano

It Takes Two to Speak The Truth

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

“It takes two to speak the truth—one to speak and the other to hear.”

~Henry David Thoreau

September is National Childhood Cancer Awareness Month. This past weekend, I had the opportunity to participate in a project that is bringing together the entire childhood cancer community– a project I believe will change the future of childhood cancer. I remember my oncologist, Dr. Dan, explaining to me how the cure rates for childhood cancer have improved remarkably, because of the sharing of information through Children’s Oncology Group. I have since learned how there are multiple childhood cancer foundations working hard to raise money for pediatric cancer research, many of them started by families whose own child has fought cancer. By taking a stand alongside one another, we can have a larger impact, and make a greater impact faster. By joining together, we can learn and share The Truth.

The project, The Truth 365, seeks to create “One Voice” for all. In creating One Voice, we can “speak the truth,” creating the opportunity for individuals, private corporations, and for our elected representatives to “hear.” With all of my heart, I have hope that our Voice will not bounce off of numb ears and numb hearts. I want each one to accept a bit of responsibility when they “hear.”

The Truth is, childhood cancer research is overlooked and underfunded. The Truth is, childhood cancer researchers must spend many of their working hours applying for grants. I don’t want brilliant pediatric cancer researchers spending their precious time writing grant applications; I want them in the lab, finding causes and cures. Sadly, in the world of pediatric cancer research, this is The Truth. If funding for research is the greatest obstacle standing in the way of ending the suffering of thousands of children, what are we waiting for?

The Truth is, funding for pediatric cancer research is an extreme, high priority for us as individuals, as a country, and as a world. Let’s stand together for action now. Time is of the essence. Children are dying… seven each day in the United States alone.

This is a pledge to our children of today and a promise to children of the future. We are looking into the face of greatness here– greatness in the form of ending human suffering.

That is, our Baby Humans.

                                                                        Photo/Image by Mike Gillette

 

 

Gold Ribbons

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

September is Childhood Cancer Awareness Month.  It has been officially declared by President Obama over a year ago.

http://www.whitehouse.gov/the-press-office/2010/09/10/presidential-proclamation-childhood-cancer-awareness-month

I have yet to see a single Gold Ribbon in a public place this entire month.

We are tragically unaware.

I am not suggesting Gold Ribbons will cure childhood cancer; I am wondering why there are no Gold Ribbons.

What crawls up the back of my spine is that I know that lack of public knowledge about childhood cancer is costing lives.

Costing children’s lives….

To me this means war.

And so, from my own little corner of this World, I write, speak, raise money, and journey in HopeMobiles.  I know that my contribution to the war is a little drop in the bucket.  I also know that I am not alone. I love knowing others who have joined to help the kids in many different ways.  I want to thank you, everyone, for all you are doing. I need to give you one great big group hug right now!

Can you breathe???????

So, little itty bitty Melinda will keep doing my MelindaThing and please, everyone else keep doing your Thing too!

Maybe next year, we will see Gold Ribbons.

Gold Ribbons are great; the real victory will be a cure.

Children's Mercy Hospital

 The more we join together, the faster we will get there…

Directory of childhood cancer organizations

http://curechildhoodcancer.ning.com//page/childhood-cancer-directory

Alex’s Lemonade Database Project

http://www.mychildhoodcancer.org/?LQID=1&origin=facebook

46 Mommas Shave for the Brave at Union Station

http://www.stbaldricks.org/events/46mommas2011

Millions of Mini-Lights

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

Amid the turmoil and chaos that is childhood cancer there are millions of mini-lights. By mini-lights, I mean moments of intense joy and happiness. Today, I am so happy, I feel like the lights are more like a beacon!

Happy 7th Birthday Braden!

My buddy, Braden Hofen, turned seven years old today.  Not one of us can come close to imagining the battle he has been through. Braden may be only seven years old, but I look up to him. He helps me be who I want to be and who I need to be.  It’s easy to get our thoughts twisted around by the routine of living our daily lives—and then—someone brings us back to reality. Braden has taught me about reality, about loving, and about courage.

Today, Big Bear, as your adorable mom, Deliece calls you… I send you HUGE Big Bear Hugs.  Please hold onto them because I will be coming to collect them soon.

I want to share with you all of you the elation and joy we feel along with Braden’s mom on this day that many believed would never come… 

Deliece shared these feelings today:

*** So today is all about celebration and happiness!  Today is a day that I’m wearing my HOPE shirt and shouting “TAKE THAT cANCER” as loud and long and to as many people as I can!!  TAKE THAT cANCER!!! You DID NOT get today!! Braden wins this one!!!!

*** Thank you LORD for this day…truly a miracle! I was driving home from Price Chopper where I picked up his John Deere cake for his friends party tomorrow and was smiling and laughing so much I was bawling and had to pull over to get it together! Happy through my entire SOUL! Thank you Lord, thank you!!

Does anyone have any Kleenex nearby? Why is it that tears of joy feel so good?

Braden’s victories makes me want to work harder so that the day we find a cure will be closer. If we all work as hard as Braden has to fight cancer, I don’t see how the illusive cure cannot be right around the next corner. If Braden  can work this hard– remember he is still a kid–what excuse can we possibly have as healthy adults not to do all we can to stop childhood cancer?

Braden, lead the way my little buddy…

Braden’s Hope for Childhood Cancer

Happy Seventh Birthday Braden!

Isaiah Alonso Foundation asks us to “Like” this page:

Please “like” this page. LaFontaine Hyundai will donate $1 to childhood cancer research through Hyundai Hope on Wheels for every like!

https://www.facebook.com/LaFontaineHyundai?sk=wall

 

Tag Cloud