A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘The Truth 365’

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 Cancer) Our 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.

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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.

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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.

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

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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.

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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

 

 

 

 

 

 

 

 

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Childhood Cancer, The Empire State Building, and King Kong

Empire State Building ResponseDear Empire State Building,

It’s true we have had our differences recently. It’s true that “an individual” did request a “tower lighting for childhood cancer awareness.” (Thank you, Tony Stoddard! A Day of Yellow and Gold to Fight Childhood Cancer https://www.facebook.com/yellowandgoldforcole?ref=br_tf.)

What is missing from your statement is the fact that The Empire State Building not only turned down Tony Stoddard’s request, but refused requests from multiple childhood cancer foundations who all applied “responsibly.” What other conclusion is the childhood cancer community to make—other than the obvious? How can we help but conclude that you simply do not care about children with cancer?

You lit The Empire State Building for the release of an Alicia Keys album.

“Wait Til You See My Smile”
When the wind is blowing in your face
Sometimes in life you don’t see straight
Pray to Him, He will show
When your head is in a certain place
Nobody around to make you safe
Stand strong and you will grow
Could it be? Could it be that “the wind is blowing in your face” and you can’t “see straight”?

Or… could it be that you are simply uneducated about childhood cancer? Could it be that your lack of  awareness is the real reason for your refusal? How ironic it is that your lack of awareness is exactly what could be causing the blockade to more awareness! Please, click on this link to learn vital facts about childhood cancer from The Truth 365.

http://www.thetruth365.org/cancer-facts/

Class dismissed.

Would you now please reconsider your decision?

Without a doubt, what would make you change your decision in less than a heartbeat would be for you to actually meet a child fighting cancer. Their utter innocence, their unabashed courage, and their inner strength would melt you. Did you know that current treatments for childhood cancer are equivalent to torture? Did you know that while these children battle for their lives, they are always thinking of others around them and how they are feeling? Have you ever seen the face of a child who looks to you for hope?

Here’s the thing.

You have the ability to bring joy and happiness to these suffering children. You have the ability to shine a light of hope over New York City and our country. You have the opportunity to save children’s lives through awareness that leads to research funding. Imagine—you could be like Santy Claus when these kids see that the Empire State Building has given them a brilliant, shiny, gold gift of hope. You could be a shimmering mirror that reflects the beautiful light that shines inside of these kids.

“Wait til You See My Smile”

As other New York establishments announce that they will be lighting gold for pediatric cancer awareness month in September, like the Helmsley Building, Times Square, Coney Island Parachute Jump, and 1 World Trade Center, I ask you to do the same. A change in your decision will not mean you are weak and crumbling under pressure; it will mean you are strong and growing.

“Stand strong and you will grow.”

If you consider all of this and your decision to light gold for childhood cancer awareness month is still, “No,” then will you please book King Kong to climb up the side of the Empire State Building to spread gold glitter all over New York City in September? #EmpireGoGold

With hope for a world without childhood cancer,

Lee Marchiano

Step up

 

 

 

 

 

 

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The Truth 365 Loves Taylor Swift

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

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“Talk is (Bleep); We Need Action” — The Truth 365

“Stop Talking and Start DOING!”
                                              ~Gabriella Miller
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Gabriella tells us to “Stop Talking and Start DOING!”

https://www.youtube.com/watch?v=QaoqnILa0l4

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Are you laughing and crying at the same time after watching and hearing ten year-old Gabriella express her opinions about our elected officials? One of the greatest things about being around kids is they tell you exactly how they feel. Is there anyone else who feels they need to hug her and give her high fives?

The signing of the Gabriella Miller Kids First Research Act by President Obama is the result of a long, arduous, and fervent campaign spearheaded by two of the most passionate people Melinda and I have ever had the blessing of meeting, Mike Gillette and Dena Scarpelli-Sherwood. This progress for childhood cancer research can be traced back to their hearts to help children with cancer and to their willingness to dive into the unknown and “stop talking and start doing.” They produced The Truth 365 Childhood Cancer Documentary to raise awareness, raise funds for research, and to gather petition signatures, all with the goal of uniting the childhood cancer community to work together to end childhood cancer.

http://m.whitehouse.gov/photos-and-video/video/2014/04/03/president-obama-signs-gabriella-miller-kids-first-research-act

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“Talk is (Bleep,) we need action.”
~Gabriella Miller
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“WOW…A 10 YEAR OLD WITH MORE BRAINS THAN ANYONE IN WASHINGTON!”

 The Truth 365 Childhood Cancer Documentary
The Truth 365 is a ground-breaking, grass-roots documentary film and social media campaign that gives a voice to children fighting cancer. The film features compelling and inspiring stories of children and their families fighting cancer as well as interviews with political leaders and several of the country’s most respected pediatric oncologists. With the help of thousands of volunteers and highly focused social media campaign, the film will inspire millions of people to show their support for children with cancer. Host: Melinda Marchiano
To learn more about The Truth 365, visit www.thetruth365.org or Facebook at www.facebook.com/thetruth365film .
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“By combining the powerful medium of documentary with the viral nature of Social Media, we aim to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, the nation’s top pediatric oncologists and several influential celebrities. In this election-year we need for our politicians to hear the cries of these children and their parents, who are desperate for funding, less toxic treatments, and ultimately a cure.”
~Dena Scarpelli-Sherwood
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http://www.thetruth365.org/one-voice/
http://www.thetruth365.org/petition/
My hope is that Gabriella, Mike, and Dena will educate you, enlighten you, and inspire you to do more than talk about making a difference in the world of childhood cancer. Let’s play Follow-The-Leaders, or become leaders ourselves. There is no time to waste. We must begin Smashing Walnuts today.
Thank you Gabriella, Mike, and Dena. Thank you!
http://www.smashingwalnuts.org/

The Truth 365 Childhood Cancer Documentary

The Truth 365 Childhood Cancer Documentary

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Gabriella Miller Kids First Research Act Signed by President Obama

“If I go, if I lose my battle then I’m going to want other people to carry on this war.”

                                                                                   ~Gabriella Miller

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Today, something extraordinary happened in the world of childhood cancer. President Obama signed the Gabriella Miller Kids First Research Act into law, with Gabriella’s family present. Gabriella was diagnosed with a brain tumor at nine years old, and became a fierce advocate for childhood cancer research before cancer stole her at ten years old. As you can see from her quote above, she now needs all of us to carry on the “war.”

http://abcnews.go.com/Health/wireStory/obama-signs-cancer-research-bill-memory-girl-23182252

http://www.wjla.com/articles/2014/04/gabriella-miller-kids-first-research-act-to-be-signed-into-law-101786.html

“This Act may be cited as the Gabriella Miller Kids First Research Act.

Termination of taxpayer financing of political party conventions; use of funds for pediatric research initiative”

The full text:

https://www.govtrack.us/congress/bills/113/hr2019/text

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“When you get cancer, you have to be all grown up and you don’t really get a childhood.”

                                                                                                                ~Gabriella Miller

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While I am feeling happy along with other childhood cancer advocates over what happened in Washington today, I cannot help but think of the Miller family. What did it feel like for them to be there for the signing today? How are they ever dealing with the grief over their loss of Gabriella? One of the things that strikes me most when I watch Gabriella’s videos is when she says, “If I die, I will be with my friends.” What an enormous burden these childhood cancer patients carry, not only fighting for their own lives, but emotionally fighting for their cancer-stricken friends as well.

If you have never “met” Gabriella, you absolutely must. Gabriella shows wisdom that comes only through suffering. The purity of her soul and her message will grab your insides and squeeze them until only love remains. Sweet Gabriella, may your mission continue. Your spirit lives. Your spirit will save the lives of many children in the future. To Gabriella’s family, thank you for raising a child with such tremendous insight, grace, and love. She has forever made an impact on my life. May she forever have an impact on our nation and our on our world.

http://www.thetruth365.org/2013/04/04/welcome-10-year-old-gabriella-miller-to-the-truth-365-documentary/

Gabriella Miller’s words: Sugar, Protein, and the need for Constant Awareness

https://www.youtube.com/watch?v=4a7NZxNMpcA

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“My biggest fear is that a little child is going to die.”

                                                                    ~Gabriella Miller

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

Happy Dance for the signing today of Gabriella Miller Kids First Research Act

 

Guest Blogger: Lee Marchiano

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This Symphony will be a Masterpiece– “Music” to Change the World

 

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

“Every great dream begins with a dreamer.

Always remember, you have within you the strength,

the patience, and the passion to

reach for the stars to change the world.”
~Harriet Tubman

Patience is a tough one. We live in the age of The Instantaneous, which makes patience even more difficult to learn, being direly devoid of societal examples. But, anything worth our time and attention also requires our patience. I say this as I think of Mike Gillette, who has been pouring himself into the production of the childhood cancer documentary, The Truth 365. This project is not only enormous, it is delicate. Maybe it is because of this delicacy that it has never been done like this before. The World of Childhood Cancer is a sticky, tricky place to step into. Further, the thought of gathering information from diverse sources and compiling it into a visual call to action for pediatric cancer research is overwhelming to me! His task is nothing short of Conducting a Symphony. Only someone with tremendous love and passion would take on such a task—only a dreamer. Without a doubt, after meeting and working with Mike, I know he is a dreamer. Without a doubt, he has the “patience and passion to reach for the stars to change the world” of childhood cancer.

Our impatience tells us, “Hurry up and release the film!!!” Wisdom takes over and lets us know that there must be very good reasons for the wait. As this project has developed, it has taken on a “life.” There have been surprises and opportunities arising each day, and I trust Mike completely—which means patience. I admire his patience in choosing to make this film the best it can possibly be, and making the priority the children, instead of the awaiting, impatient audience. I will be the first to admit that I cannot wait to see it; I cannot wait to share it. When impatience knocks, I envision Mike juggling all kinds of things I could never imagine, and my selfishness shamefully subsides. Mike loves the kids, and his vision, compassion, and passion will be clearly evident when The Truth 365 is complete.

Thank you to all of the families, childhood cancer patients, siblings, doctors, teachers, and volunteers for your contributions of time and for your outpouring of support for this project. I patiently await the masterpiece I know will be arriving, via Mike Gillette, our Change the World of Childhood Cancer Conductor. 

Blessings to you Mike. May mountains move… all for our dearly loved children.

“For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice – no paper currency, no promises to pay, but the gold of real service.”       ~ John Burroughs

*** Thank you to Carina Corral and KSBY for your continued support to help children with cancer!

http://www.ksby.com/news/documentary-on-childhood-cancer-hosted-by-a-nipomo-teen-cancer-survivor-set-to-be-released-sunday/

Go Lane! Fire Department New Albany, IN

More and more support for Lane Goodwin!

Someone showed their love for this little boy by making him a Halloween Costume that included his wheelchair!

Update for my last post– Justin’s Tribute to Avalanna 9-29-12

http://www.youtube.com/watch?v=2sh3tmWFlB4&feature=youtu.be

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Can You Feel the Heartbeat?

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

 

“Lane’s night has been a lot better than his morning. He has actually ate some food. God please hear the Prayers across the World for a Miracle for our sweet boy!”

 

 

Today, on launch day for The Truth 365 Childhood Cancer Documentary, I bring you The Heartbeat of Childhood Cancer. Today, Lane Goodwin continues fighting as Thumbs up For Lane grows beyond everyone’s expectations. While I absolutely love hearing of all the communities and celebrities who are joining the army of support for Lane, I can’t help remembering the children who are fighting and dying in silence… without worldly support. I send my love and Thumbs Up For Lane on this day, along with love for all other childhood cancer heroes.

http://now.msn.com/cancer-patients-facebook-page-surpasses-100000-likes

http://www.14news.com/story/19610403/community-gathers-in-support-of-lane-goodwin
 https://www.facebook.com/PrayersforLaneGoodwin

 The words, thoughts, and feelings from families of our heroes capture The Heartbeat of Childhood Cancer…

 Prayers for Will
‎”3:00 am this morning our beautiful boy passed away after the bravest, most courageous battle with brain cancer. Our ‘Iron’ Will exemplified an unbelievable ‘Will’ power that left our family humbled and inspired. Yesterday morning his breathing was so shallow he was unable to get the words out but even so would mouth the words from time to time he loved us. Several times throughout the day, evening and night our family gathered around him to be with him as his heart would beat so faintly and his breaths so shallow we knew it was his time. After a few minutes of hearing our voices his heart would pump and his breathing would increase and he would rally the fight again. By early morning our nurse who has cared for so many patients in their last hour was completely baffled and said she had never seen anyone as strong, brave and courageous as Will fight such a battle and be so concerned to the end of worrying about his family. He didn’t want to leave us. After watching him suffer we were praying for him to go on his journey. Tears flowed down his precious face as breaths and heartbeats faded away….and then peace. His eyes opened and you could see him looking for a time…and then he was gone. Our family gathered around him and Jake prayed that Heavenly Father would be there to greet him and comfort him as he left his earthly family behind, how thankful we were for the privilege of knowing and having this precious boy in our lives and the examples he set for us. It was a spiritual experience our family shall cherish. This afternoon Allen and I will start making arrangements and we will update you. We still have much to share, our hope is you will continue to travel with us on this journey and embrace the legacy of our Iron Will. God Bless. Keep the Faith and never like Will let life defeat you. Enjoy the Journey. Trena and Family.”
 Support for Rylie
“My daughter was diagnosed with ALL this past April. My husband is a Navy pilot and was deployed on the USS Abe Lincoln in the Persian Gulf at the time. He was flown home immediately and we were reunited at the hospital. A few later we were amazed to learn that his squadron painted my daughter’s name on his jet along with a ribbon bearing her name. All the pilots also added the orange ribbon with her name to their flight helmets. Throughout the duration of their deployment the jet with Rylie’s name flew combat missions in Afghanistan”
 “So results are in. We learned that (her) cancer is small cell, and harder to treat. We learned that there are other cancers that share the same cells. We also learned that there simply are no more treatment options. We learned that to exhaust all standard treatment, surgery options, radiation treatments, and oh maybe 8 Or so (lost count) trials takes close to three quarters of a decade. We learned that our fears are now what we know. I still pray every day for that one researcher in a lab somewhere to holler “EUREKA!!!, WE FOUND THE CURE!!!” I hold that hope, gripping it tight, knowing all the while that funding is dismal at best, and osteosarcoma is an orphan cancer. That one tiny beam of hope is why I am able to get out of bed every morning, and I won’t let it go. Telling me to stay positive won’t make me un-know what I wish I didn’t know. It’s crazy, Im crazy, and it all sucks. If I ever hit the lottery,,, well, maybe somebody else’s daughter would have a fighting chance. Even if a miracle happened today, (she) has permanent damage to her bones, spine, organs… I have just been so heartbroken. That little beam of hope that shines on me like a flicker of sunlight through a storm cloud sure has a big job to do. Peace and love, (  ) Mom”

Can you feel it?

This is the Heartbeat of Childhood Cancer.

Go Gold Childhood Cancer Awareness

 

Opportunity to take Action from PAC2:

People Against Childhood Cancer (PAC2) via Van Andel Institute
“It takes action to fight childhood cancer. Researchers research. Doctors doctor and nurses nurse. Advocates advocate. And the parents and kids….well, you know what they do. 

Today we ask PAC2 Facebook members to take action to raise $10,000 to fight childhood cancer. No cost except two minutes of your time.

Dell Services will donate up to $30k to our friends at the Van Andel Institute for every view of the video link below. So far they’ve raised $20k. 

If each and every PAC2 member watches you will have raised $10,000 to fight childhood cancer.”

 

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The Extinction of Childhood Cancer

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

“We will do everything we can to keep that bully away.”

~Father of a child with cancer   

from

The Truth 365               

Visual images are powerful. Sometimes, it is true that a picture says a thousand words. In order for us (I am talking about serious advocates for children with cancer) to progress to the next level of creating awareness in our society that will begin to truly save lives, we need togetherness, and we need a tool. These are two of my favorite things about The Truth 365 Documentary project. With the images that have been carefully taken and placed together, with many childhood cancer organization, hospitals, and doctors coming together, we have an opportunity before us to take a leap up that huge plateau that stands in the way of cures for childhood cancer. When people of the same interest and same passionate hearts join together, change can happen. We will “Keep That Bully Away!”

 “What change would you like to see happen, Melinda,” you say?

 Earlier Detection

80% of children who are diagnosed with cancer are diagnosed at advanced stages. This figure compare to 20% in adults.

Develop Less Toxic Treatments

Two thirds of children who survive childhood cancer have life-long effects from the treatment that helped save their life.

Seattle Children’s Hospital on my Make-A-Wish Hope Tour

These changes are only the tip of the iceberg. I want to be able to educate people– that 80% could be your child, or your grandchild, or your brother, or your sister. If people know the signs and symptoms of childhood cancer, then maybe that 80% can drop dramatically. We can then detect childhood cancer sooner, have fewer missed diagnoses, and save more children’s lives.

I received an email today from a teacher who has been sharing The Truth 365 videos with her middle school class. They recently lost a beautiful girl from their town. Brielle battled cancer for many years, and the entire community gathered around to support her. This teacher wants to make a difference for Brielle, who obviously touched the town with her spirit. What a beautiful way to remember her, by helping others. The more we learn, the more we can protect our children, and the more we can become the compassionate, caring human beings we were placed here to be.

One of the best things we can do for Childhood Cancer Awareness Month (which is every month of the year for me—not just September!!) is to learn more about it ourselves and help others learn.

Please share, please get involved.

Are you a teacher? You just may save a child’s life by sharing.

Finally, I want to thank Professor Kristen Coppola from Monmouth University for becoming the first University to support The Truth 365…

And to Pepperdine University for being the second! I love Pepperdine! I love each one of you who goes the extra mile to help by sharing. It will make a difference for suffering children who have no voice. What better use of our time and our lives?

The Truth 365 Day 6 Preview

http://www.youtube.com/watch?v=fuZ3tIY7GIA&feature=share

 I am checking to see if you have signed the petition—not scary—very quick—help the kids—you have the time!

 http://www.thetruth365.org/petition/

I love my calendar from St. Luke’s Mountain Tumor Institute in Boise:)

“I want to help be on the forefront of making childhood cancer extinct.”

~Melinda Marchiano

From The Truth 365 Day 6 Preview

 

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Hunter

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

 

“My humanity is bound up in yours, for we can only be human together.”

~Archbishop Desmond Tutu

 

Yesterday, I wrote about families who have suffered the greatest of losses who turn their grief into hope for kids of the future. Great loss and great suffering can serve as powerful motivators for good. The enormous challenge for those of us who work to raise awareness for childhood cancer is the delicacy of the task. If we pound people with horrible images of The Truth, (even though it is The Truth,) no one will look, and no one will learn. But if we combine those images of The Truth in a wise and compassionate way, like Mike Gillette has done for Day 3 Preview of The Truth 365, we can reach out to the humanity we are “bound up” with. I have HOPE that humanity will listen with delicate, sympathetic hearts, and engaged and active minds.

Yes, I would like all of humanity to become engaged in the mission of ending childhood cancer. Please don’t look at me with those crinkly eyebrows. It is not too much to ask all of humanity to care about these kids. 

The Truth 365 Healing Hunter Foundationhank you, Lenore and Zen, for sharing your gift of Hunter with the world.  (HealingHunterFoundation)

The Truth 365 Day 3 Preview

http://www.youtube.com/watch?v=DudMv3_Brxk&feature=youtu.be

Lenore Davis, Hunter’s mom wrote beautiful thoughts from her heart on The Truth 365 Facebook page today…

“Woke up this morning with very puffy eyes. Didn’t realize Zen and I were going to see our lives flash in front us last night before we went to bed. It was almost as if a sweet lil’ piece of us died all over again. 

Watching the amazing tribute that TheTruth365 pieced together for Hunter was extremely touching and very heartwarming. We were not expecting to see so many deeply felt images of Hunter’s adorable face get placed to a song that seemed so appropriate. After viewing it, both of our faces laid in tear soaked pillows. Still in disbelief of what happened to our lil’ love. Zen reached over and held my hand, and as soon as a piece of his warm, loving body touched mine…I held on for dear life. Such a connection to Hunter I feel through him. Our pain coincides and our broken hearts collide in a way that I feel will bond us together forever, and keep Hunter sweetly by our sides. 

Thank you once again, Mike and TheTruth365, for honoring our precious Hunter amongst so many other special lil’ souls…those that have turned into golden angels and those that are still fighting. Zen and I are truly honored to be standing with you and feel ever so grateful to be contributing to this cause. These magnificent children are being heard and their words and their stories are tenderly piercing the hearts of thousands of individuals who can, and will, make a tremendous impact. 

Much love, strength and peace and many, many blessings to all of the families out there whose lives have been touched by childhood cancer. Lenore, Zen and Angel Hunter Zen”

Hunter…

Let our love for your beautiful face and your sweetest of spirits, guide us and strengthen us on the road to a cure.

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Skipping and Squealing with Squeaky Shoes On

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

 

 

“Snowflakes are one of nature’s most fragile things, but just look at what they can do when they stick together.”

Unknown 

 

 

Something that never ceases to amaze me, with the more I learn about the children and families affected directly by childhood cancer, is the sheer multitude of them who become passionately involved in ending the suffering of children with cancer. This alone speaks volumes. My heart breaks for the families who no longer have their child by their sides. And here they are, fighting for our kids of the future… making sure that no child has to face what their child faced.

If people could see how hard they are working, or even feel a glimpse of their pain and loss, all of humanity would step up as an enormous support system to help them in their mission– and to honor and recognize the bravery of their childhood cancer heroes. 

At the very top of our “To Do List,” as a World, Country, and as People, is to help fight for the children who have no voice. Children fighting cancer are too busy fighting to have a voice, and too young to articulate their needs to the adult world. Somehow, these kids make the world brighter, even though their own world is falling apart. I want to recognize them and honor them. I saw a little girl and boy skipping and squealing through a store with their Squeaky Shoes on, and I thought…

“That’s what I want for all kids.” 

If you want this for all kids, there are many things you can do to help get rid of the Childhood Cancer Monster. 

Alexa Nawrocki 

My mom and I had the honor and great pleasure of meeting Joann Nawrocki of Alexa’s Foundation during the Hope Tour of Summer 2011. Alexa lost her battle to cancer, but Joann has worked tirelessly to bring Alexa’s love and light to other children fighting cancer. We love you Alexa! We love you Joann!

Joann Nawrocki
Alexa Nawrocki Pediatric Cancer Foundation

Someone else Mom and I had the honor of meeting during that time is Ali McDonough, and her father, Joe. Please vote for Ali McDonough B+ Foundation. She is up for an award, and she really, really has earned it. After the loss of her brother, Andrew, she has turned her loss into hope for children with cancer. Thank you Ali!

http://www.nascar.com/promos/bettyjanefrance/vote/thank_you.html

Please take a moment to vote for Ali– B+Foundation!

Another way you can support these families and honor the children…

The Isaiah Alonso Foundation Chase Community Giving and Ethan Jostad Foundation

(You can vote for two! Just a moment of your time!)

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=ein|38-3818833

https://www.facebook.com/ChaseCommunityGiving/app_162065369655?cv=2&app_data=location|/charity/view/ein/45-3049472

If you have not seen them yet, here are the first two previews for The Truth 365. 

Day one Preview of TheTruth 365

http://www.youtube.com/watch?v=URnulziqMNA&feature=plcp

The Truth 365 Day 2 Preview Campaign

http://www.youtube.com/watch?v=djGaTAlfrXE&feature=youtu.be

This includes The Truth 365 Interview with Talia… before she knew her dream to meet Ellen would come true!

One more thing I want to share with you today is the inspiring story of childhood cancer survivor, Sabrina Cannella.

http://www.yorkregion.com/news/article/1502520–people-we-love-sabrina-cannella#.UFO__k_ooO8.mailto

I am in awe of what families and survivors are doing for our kids of the future. I imagine what can happen with the support of our communities, businesses, and government. I know there can be a day when all kids can skip and squeal, with their greatest care at that moment being that their shoes light up and squeak.

 

 

 

 

 

 

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