A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘DIPG’

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

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What Childhood Cancer has in Common with Landing on the Moon

IMG_2650We are nine days into September, Childhood Cancer Awareness Month. While I feel thrilled and encouraged by more Gold Lighting victories for childhood cancer awareness, there are times when I realize just how far we have to go before we even come close to becoming societies educated about the number one disease killing our children. One of these times struck me right between the eyes.

I learned, just a day ago, that Neil Armstrong’s daughter, Karen, died of a brain tumor in 1962. Wow.

Given the excitement of this kind of job, why did Armstrong choose to join the space program? Hansen says he isn’t sure, even after all his research, but he pointed to the fact that Neil’s daughter, Karen, died of cancer at the age of two in early 1962. “I think it had a very fundamental effect on Neil’s marriage, on his family, on Neil’s own career,” Hansen said.

“It was only four or five months after his daughter’s death that Armstrong put his name in for astronaut selection. Hansen believes that Armstrong “saw Apollo as a way of refocusing his energies and doing something important, and it was a way for him to really deal with his daughter’s death.”

                                                                ~James R. Hansen, Biographer

Further, I learned that a child who is diagnosed with DIPG—the same type of cancer Karen died from—is treated today with the exact same treatment.

A child diagnosed with DIPG today is treated with the exact same treatment as a child who was diagnosed in 1962!

With the tremendous advances in every area of human life since 1962, it is appalling that this is true.

When Melinda and I were in Washington, D.C. this past June for Childhood Cancer Action Days, we planned extra time to visit museums. Something about seeing the exhibits where people gathered together to stand up for their human rights made me look at the current state of childhood cancer advocacy in a more focused light.

Solving the problems surrounding childhood cancer is not going to happen without a joining together of forces, without establishing specific goals, or without sacrifices. Just like Neil Armstrong refocused, today there are numerous bereaved parents who are “refocusing” their “energies and doing something important.” These parents are heroes. I would love to begin naming a list of them, but I know that is not what they want. They don’t want their names honored; they want their children honored. They want awareness that leads to funding for research that will bring less toxic treatments and cures for childhood cancer.

I won’t name them. History will name them. History will remember them. Your children and your grandchildren, and their grandchildren will have a better life here on Earth because of the sacrifices these heroes are choosing to make today. Someday in the future, I will stand in that same museum and read about these people and the great advances they achieved toward cures for childhood cancer.

The most recent communication I received from PAC2 states exactly where we need to begin to be certain that a child will not be diagnosed with cancer 52 years from now and receive the same treatment as today! After typing “52 years”, I cannot breathe…

Go to the moon challengeFrom: PAC2 https://www.facebook.com/PeopleAgainstChildhoodCancer/photos/a.372700847313.154528.370104237313/10152297179327314/?type=1&theater

#ChildhoodCancerChallenge

#GoToTheMoonChallenge

What childhood cancer has in common with landing on the moon is history. The history of Neil Armstrong’s loss of his precious daughter, Karen, must awaken us. We have been “asleep,” for 52 years while our children have been crying out to us for help. Like Neil Armstrong, we have the opportunity to make history. In order to make history, we must create and carry out specific goals, just like they did in the 1960’s in their quest to land on the moon.

“Actually, with cancer, the end of each day is a goal, and waking up in the morning is a victory.”

 ~Melinda Marchiano, Grace: A Child’s Intimate Journey Through Cancer and Recovery

It’s time to combine all forces on deck. There is not a moment to waste.

History is being made each moment. Take the #ChildhoodCancerChallenge

Commit. Sacrifice. Focus. Act. Adequate funding for childhood cancer research must begin today for quicker cures.

This will be better than any moon landing could ever be! The end of childhood cancer…

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

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

Guest Blogger: Lee Marchiano

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