A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Childhood Cancer Survivor’

Support for Noah’s Light Foundation and the NOAH Protocol

Janet Demeter, Executive Director of Jack’s Angels Foundation, at Night of Golden Lights at the White House, CurefestDC

The Founder of Noah’s Light Foundation, Amber Larkin, received notification on October 23, 2014 that the Food and Drug Administration granted The University of Texas MD Anderson Cancer Center approval for a new pediatric cancer treatment developed to treat pediatric brain cancer, called the NOAH Protocol. This is remarkable and thrilling, offering new hope for groundbreaking results that have eluded researchers for three decades. For some horridly aggressive types of childhood cancer diagnoses that have a 0% survival rate, this is the best Halloween “treat” that could ever be created!

“Noah was diagnosed just before Halloween trick-or-treating, and it’s only fitting that we’ve received FDA approval to begin testing this month. Long before I lost my son to cancer, I knew that there had to be better treatments through personalized cell therapy – using your own immune system to help fight the cancer. His illness has defined the rest of my life. There are so many more ‘Noahs’ out there, and I now do this for each and every one. My wish is that the NOAH Protocol becomes a catalyst for the cure for all cancers.” ~Amber Larkin

The NOAH Protocol was named after Amber Larkin’s son, Noah, who fought medulloblastoma and died in 2012 when he was just eight years old. Ever since, his lovingly determined mom, Amber, has been on a mission to create hope and change for all children diagnosed with pediatric brain cancer. NOAH stands for New Opportunity Advancing Hope. For children battling childhood cancer, there is no greater hope than a possible cure. For survivors of childhood cancer, there is no greater hope than less toxic treatments which will both heal and preserve their future health. The sound of “Immunotherapy” instead of “Chemotherapy” is like a hymn sent straight from heaven!

For more detailed information:

https://www.noahslightfoundation.org/the-noah-protocol/

 “The NOAH Protocol (NewOpportunity AdvancingHope) is groundbreaking, advanced immunotherapy to treat children diagnosed with brain cancer. Until this treatment, chemotherapy had to be administered in extremely high doses to the entire system so that it could breach the blood-brain barrier, a protective layer that surrounds the brain. Radiation is aimed at the entire brain, damaging healthy cells in the process and rendering younger patients who survive unable to read, tell time or tie their shoes.”

Knowing that this treatment will treat cancer at the tumor site, without toxic chemotherapy and radiation, makes me fill up with tremendous hope for the future of our children’s health. Imagine…

Oncologists will use patients’ own cells, cells called NK, or natural killer cells, to fight their tumors. A unique surgical technique implants these cells directly through a port at the cancer location. The Killer Cells then do the job they are trained for; they kill cancer. 

Dr. Ronald DePinho, President, MD Anderson Cancer Center

Dr. Ronald DePinho, President of MD Anderson Cancer Center, speaking on pediatric cancer therapy development issues at the Congressional Childhood Cancer Caucus on September 19, 2014

It is not surprising to me to learn that this huge step forward is due in large part to the love of a mother for her son. Brains and research funding are vital components for moving forward for cures for all children with cancer, but love will always be the driving force that binds everything together for great advances. Without love, data is simply data.

Without love, this fantastic new hope for treating pediatric brain cancer would not even exist.

Don’t you just love the love of a mom?

You can support Amber Larkin’s mission by voting daily for her to receive the BJFH Award of $100,000 for Noah’s Light Foundation.

http://NASCAR.com/award

Sample Tweet to vote, copy, paste, and share, share, share!

I voted 4 #AmberLarkin @NoahsLight #BJFHAward finalist to win $100,000 4 @NoahsLight Cast your vote: http://NASCAR.com/award daily #ChildhoodCancer

Janet Demeter, Executive Director of Jack's Angels Foundation at the Congressional Childhood Cancer Caucus

Janet Demeter, Executive Director of Jack’s Angels Foundation at the Congressional Childhood Cancer Caucus

Guest Blogger: Lee Marchiano

Curefest DC 2014 on the National Mall– Photo Memories

Curefest 2014 422After two days filled with inspiration  in Washington D.C., a third followed. CurefestDC 2014 began at 9 am on Sunday, September 21st on the National Mall. My decision not to brave the “waters” of the dreaded metro by myself on this morning proved to be a good one. I gobbled some breakfast in a taxi on the way and arrived with a full belly and a happy heart.

Festive is the word I would use to describe my first impression. My second impression was thankfulness for all the people who came, all the people who worked to create the event, and all the volunteers who donated their time to put this enormous event together. 

The setting for CurefestDC on the National Mall made everything that was there and everything that happened a notch or two more epic. Backdrops of the Capitol Building and the Washington Monument have a way of doing that. I understand there were more than 75 foundations present under the white pop-ups lining the mall. 

This was a day for the kids. I loved seeing kids scurrying around collecting as many wristbands as they possibly could. They hugged each other, sat on each other’s laps, walked, danced, and some even spoke. Survivors and siblings were honored and received special gifts.Curefest 2014 441

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One of the most fun and heart-warming times of this day was a butterfly release. Families were given boxes to open and free the butterflies inside. The look of wonder, awe, and joy on the kids’ faces was alone worth the trip to D.C. Before opening the boxes, Ellyn Miller told the crowd, “These butterflies are for all of our kids.” With that, they gave their boxes a kiss, then opened them up to reveal the life within.

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 Abby Miller sang the National Anthem while Delaney Clements held our nation’s flag. The walk began…

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The camaraderie present was something so strong that it seemed possible to physically touch it. The gorgeous somber and reflective tone of the night before at the White House transformed into a tone of courage, love and purpose– even joy. 

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Dancers danced in honor and in memory of children fighting cancer. Here, dancers hug Delaney Clements after their performance.

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Joel Waldman, from Fox 5 NY, received an award of recognition and thanks for his outstanding work to bring awareness to childhood cancer.

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Gabriella Miller’s mom, Ellyn and Erin Griffin’s mom, Amanda, had their heads shaved at the event to bring more awareness to childhood cancer.

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Billy Sherwood, crazy-cute and courageous survivor, helping at his mom’s booth for Arms Wide Open Childhood Cancer Foundation.

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I remember– I will never forget– how much Melinda hurt inside when she was in the middle of her cancer battle and she was not able to dance. This moment at Curefest brought back memories of pain, and at the same time it crushed those memories with the victory I witnessed when Gabi Shull took the stage and danced. Oh my gosh! Beautiful Gabi! 

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Thank you to Alvin Jones, Master of Ceremonies with a huge heart for the kids.

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The man who is turning the world gold #WorldGoGold, Tony Stoddard (Cole’s Dad) stands with Amanda Griffin (Erin’s Mom).

Like I mentioned at the beginning of this post, there is something epic about the setting of CurefestDC. Do you notice what is directly between Tony and Amanda in the photo above? Hello, elected representatives, childhood cancer activists are more organized and more determined than ever before to have you listen to our One Voice to create change for childhood cancer. We need cures right now for all kids.

Like ten year-old Gabriella Miller so eloquently stated, “Talk is bullshit, we need action.” 

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

It’s not okay to sit back, flap our gums and do nothing. CurefestDC gave all of us an opportunity to do something. I think CurefestDC inspired everyone who was present. There is no greater cause than the health of our children. There is nothing like spending the weekend with people who know this is true. 

CurefestDC was one huge blast of hope and inspiration. 

Don’t worry, Gabriella, we’re going to do a LOT more than talk!

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Guest Blogger: Lee Marchiano

 

 

 

 

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

National Siblings Day — Alex’s Lemonade Stand and SuperSibs!

 

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

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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!!!

 

Guinness World Record Shave for St. Baldrick’s Foundation on the Today Show

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

 

 

 

 

 

 

 

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.

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“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

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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

“A Day of Yellow and Gold to Fight Childhood Cancer” Tony and Cole

 

“A Day of Yellow and Gold to Fight Childhood Cancer”

What a world this would be if…

…if we would choose to take care of our children first.

Tony Stoddard is a leader in the world of childhood cancer advocacy, believing our kids deserve the best we can provide. Melinda and I have great respect for this man, his mission, and his brilliant campaign to color our country gold for Childhood Cancer Awareness Month in September. Along with Tony, we honor the memory of his son, Cole.

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“This past September I was mired in grief at the loss of my precious five year old son Cole. He passed away from neuroblastoma cancer on January 20th 2012. I created my page “A Day of Yellow and Gold to Fight Childhood Cancer” to honor the memory of my son Cole and all children who have faced the monster that is Childhood Cancer.
I am determined that we will never go through another September without the gold of Childhood Cancer Awareness shining everywhere. Without awareness childhood cancer will remain underfunded and ignored, leaving many thousands of children to continue to suffer through antiquated treatments and to have less than the best chance to survive this monster. I am unwavering in my attempts to see gold each September on town buildings, on the White House, on the fields of the NFL and MLB, on ribbons worn by celebrities, politicians, and media personalities. I want to see as much gold in September as we see pink in October! Our children need and deserve this!”
                                                                                                                 ~Tony Stoddard, Cole’s Dad

  (From People Against Childhood Cancer (PAC2) website)

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I am not sure where or when the motto, “Women and children first” went out of style. I have a sneaky suspicion it left the moment our nation decided money is paramount. I have suspicions it left because treating children with cancer is not a profitable business, unlike treating adult cancers. I suspect it left because we have lost ourselves in adult selfishness.

Today, I ask you to take a stand with Tony for Cole. Take a stand with Tony for all the children who have fought, have suffered, and have taught us that they are worth every bit of “guts” we need to spill to see they receive a much different future. Tony is right. Without awareness, kids with cancer will continue to be treated with “antiquated treatments,” and funding for research will remain frighteningly low. If you haven’t already, please like Tony’s page to color our country yellow and gold. While you are there, tell him how much you appreciate what he is doing for our children. Tell him his heart and the “guts” he is spilling for our dear children are making a difference. Steer your heart under Tony’s wings and help his mission to end childhood cancer soar!

https://www.facebook.com/yellowandgoldforcole

https://twitter.com/smilesforcole @smilesforcole

Smile, Be Happy (Cole’s Song)

https://www.youtube.com/watch?v=ZSn2WcSo9fc

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Advocacy Opportunity!

Please give a few moments of your time to be an advocate for kids with cancer.

From Kids V Cancer Facebook page today:

#endchildhoodcancer “Please post this pic and put the hashtag #endchildhoodcancer on your status. For every photo shared Hyundai will pledge another $1 to AACR Pediatric Cancer Programs, up to $5,000… as many times possible until Wednesday!”

https://www.facebook.com/kidsvcancer?hc_location=timeline

Can you say "Viral"?

Can you say “Viral”?

 

 

 

                   Ready, set, go!

 

 

 

 

 

Guest Blogger: Lee Marchiano

Melinda will be back soon!

 

 

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