Amber Larkin always keeps son Noah close to her heart and has helped find a new protocol for treating pediatric brain cancer.
— The FDA has just approved the NOAH Protocol for children whose parents have been told there is no hope.
Noah Larkin loved “Star Wars” so much that for his seventh birthday, his mother organized a huge party with more than 30 movie characters, the Landspeeder from a “Star Wars” film, a Jedi training session and a 3D cake in the likeness of Planet Duro bounty hunter Cad Bane.
The big bash was necessary; his mother, Amber Larkin, didn’t know if this would be the last one she would throw for her son, who had been diagnosed with brain cancer a year earlier.
Noah did celebrate one more birthday but died in 2012 at the age of 8.
During her son’s illness and after his death, Larkin was determined to find a more humane approach to treating children with brain tumors, and her persistence has paid off.
“We are so proud to announce to our local community the official first announcement that the FDA has approved the NOAH Protocol,” Larkin said Tuesday. “I’ve been working on this since 2011.
“It is now an open protocol, which means children with certain types of recurrent brain cancer now have a new non-toxic, never-been-done-before-in-the-world treatment option. Several children have been waiting and will start as soon as possible.”
She added: “Noah would think this is so cool and amazing, and I have never been more proud.”
Journey toward a cure
Noah’s story — and a new life direction for Amber Larkin — started in 2009 when 6-year-old Noah threw up one morning before school. Because a stomach virus was going around, Larkin stopped by the pediatrician’s office for a checkup. When she mentioned Noah was having headaches, the doctor suggested she make an appointment for an MRI to rule out anything serious.
At 8:30 that night, Noah went in for a scan. At 11:30 p.m., the doctor and three clergymen met Larkin with an image of Noah’s brain — and the golfball-size tumor lodged in it.
“In a matter of 12 hours, we went from a stomach bug to brain cancer,” Larkin said.
After nine hours of surgery, the surgeon told the family he had removed all of the tumor, even though there might be some residual cells.
Larkin remembers thinking, “What if there was something that could go in there and eat those residual cells?”
Noah’s mother received three binders with information on medical trials and had to pick one to treat her son.
“That’s when my search for something different began,” Larkin said.
When Noah started radiation and chemotherapy, she became a “momcologist” and researcher.
“We literally searched the world over for that something different,” she said.
Larkin talked to doctors, read white papers, read published journals and held conference calls with doctors and then put them on conference calls with each other.
“She made people talk to each other,” said Molly Piveral, of Noah’s Light Foundation, who met the Larkins when she worked at Arnold Palmer Hospital for Children and Noah was a patient there.
Larkin was on the quest for individualized cell therapies.
“Each person’s cancer is so different for their bodies,” she said. “Why are we still trying to shoot a grain of salt with a shotgun? Because that’s what chemotherapy is, was, to me.”
Larkin participated in a TEDx Talk last year at the Garden Theatre, where she shared her son’s story, as well as facts such as:
• There have been zero new drugs created for Noah’s cancer in 30 years.
• In 20 years, only two drugs have been developed for children’s cancer.
• For every $1 donated to cancer research, pediatric cancer research gets 1 to 3 cents.
Over the next two years, Larkin tried the different available protocols, even some she deemed torturous to the young patient.
On a clinic day in March 2011, Larkin was armed with notebooks and a list of questions for the doctors. She and her research turned a major corner when one doctor looked at her work and said she needed to talk to Dr. Laurence Cooper at the University of Texas MD Anderson Cancer Center in Houston because he was the primary investigator on the cell therapy she was seeking.
Dr. Cooper actually called Larkin that evening and told her NK (“natural killer”) cell therapy was the answer. For five straight nights, Cooper asked Larkin many questions about her son.
In order for Noah to get this type of therapy, Cooper said, he would have to have a port. Check. He would have to have a shunt. Check. He would have to have an Ommaya port in his brain. Check. Everything the doctor said Noah would need to start this therapy, Noah had.
Then, Larkin said, she was the one asking questions — like, why is personalized cell therapy not used?
On the sixth night of talks, Dr. Cooper said he and his lab would “change their course of research and apply personalized immune-based NK cell therapy to pediatric brain cancer,” she said. “This is a first in the world.”
Larkin explains it this way: NK cells are natural killer cells found in the immune system. They are the most aggressive white blood cells and actually reach out and touch cells — with tentacles — seeking out bad ones.
Cooper and his lab have been able to take an individual’s NK cells, strip them of their hunting ability, feed them that person’s cancer, reprogram them to hunt only that, put them back in the patient’s body and let them do the personalized hunting.
“No radiation, no chemotherapy, no toxicity,” Larkin said. “Dead cancer cells by our immune system.”
She planned for Noah to be the first patient and then see the protocol offered as a new phase one trial for all children.
Larkin was engaged in conference calls every two weeks, “and the consortium grew as doctors from all over the world [were] bringing their pieces of what would be known as the NOAH Protocol,” she said.
The original protocol was written, rewritten and sent to the Internal Review Board of MD Anderson, which was “floored at the paradigm shift in curing cancer,” Larkin said.
However, they learned that this could not be a story of one; the trial had to be opened to all children.
By this time, Noah had been battling the disease for two and a half years. He would not be the first recipient of this new protocol; he died May 29, 2012.
“He received his wings and was freed from cancer forever — just not the way we’d hoped,” Larkin said.
The NOAH Protocol
NOAH stands for New Opportunities Advancing Hope.
Larkin said, “NOAH is for families who have been told there is no hope.”
Jedi Noah, as his mother still calls him, lives on in the memories of his family and friends — and in researchers’ labs, where his cells are still being used today.
Noah’s cancer cells have grown in animal models, and once NK therapy is applied, these animals are cancer-free.
The next step is to get funding for the trial.
People don’t like to talk about pediatric brain cancer “because it’s too sad,” said Piveral, whose son fought leukemia 10 years ago. But armed with the fact that only 4% of all national funding goes to pediatric cancer, she and Larkin vow to make people talk about it.
Larkin started Noah’s Light Foundation when her son was first diagnosed with cancer; Piveral is one of the employees. The office is just west of downtown Winter Garden, and the foundation’s purpose is to fund research for the NOAH Protocol.
Larkin speaks to local and national groups, and last month, she gave the keynote speech at the annual Hyundai Hope on Wheels Gala in Washington, D.C.
After Noah’s death, his friends needed a way to channel their grief, too.
“It was their desire to want to do something,” Piveral said. “It was in their grief that they wanted to try to understand something that’s not understandable.”
“Instead of ‘Why why why?’ they said, ‘What,’ ” Larkin said.
The children of two of Larkin’s friends wrote a proposition and presented it to their parents and Larkin.
“They all became the mission of Noah’s Light,” she said, and they run just like a regular board of directors, holding meetings nine times a year and discussing ways to get the public engaged in understanding the need for pediatric cancer research.
Larkin said she thinks this is the only foundation in the country with a working junior board of children and teens.
“It’s an active, amazing group of kids who are making difference,” Larkin said.
The members are 13-18, but there are two exceptions: 7-year-old Landin Larkin, Noah’s sister, and Ava Harley, 9, who was close friends with Noah.
The remaining junior board members who are working on Noah’s behalf are co-chairs Andrew Marotta and Allison Tankersly, Nick Marotta, Victoria Assleta, Brooke Dyer, Nolan Dyer, Hugo Le Helley, Trever Jones, Abby Marotta, Isabelle Reason, Preston Strenth, Carter Wanzek, Keziah Wanzek and Ryan Wanzek.
Nick Marotta, who made the initial proposition, came up with the slogan: “We Noah cure is possible.” They are waiting for their new T-shirts to arrive so they can bring awareness to the cause.
The junior board also has a three-minute video on YouTube that sheds light on the lack of funding for childhood cancer research. Members wrote the script; directed, shot and edited the video; created animations; and wrote and recorded music. It can be watched at youtube.com/watch?v=71O870YGstc.
In the video, Abby Marotta, asks questions to random people in downtown Winter Garden and shares childhood cancer facts.
Ann Marotta said she asked her three children why they wanted to help: “They say it's because they saw what Noah went through. His treatment made him sick for so long and didn't save him in the end. … They miss Noah, and they want his legacy to be a successful treatment found through the NOAH Protocol.”
Larkin said, “The point with Noah’s Light Foundation is everything we are doing has never been done before.”
Vote for Amber
Amber Larkin, founder of Noah’s Light Foundation, is one of four national finalists for the 2014 Betty Jane France Humanitarian Award. The winner will be determined by who has the most votes and will receive $100,000 for the children’s charity they represent, plus a 2015 Toyota Camry. The other three will get $25,000 for their charity.
People have until midnight Dec. 4 to vote online at nascar.com/award and can vote daily.
“The award seems so natural to me because Amber is such a humanitarian,” said Molly Piveral, an employee and advocate of Noah’s Light Foundation. “She will not stop.”