LIVINGSTON, NJ — Shortly before the two-year anniversary of Livingston teen Jake Kestler’s death, the pediatric cancer foundation established in his memory officially funded its first trial, which is also a successor trial to the therapy Kestler received in 2017 that his parents believe extended his life.
Although Kestler was only 14 years old when he lost his battle with brain cancer on April 11, 2019, his courage and passion for helping others with his condition was an inspiration to thousands of people in Livingston and far beyond. According to Jake's parents, Josh and Gallite Kestler, the success of Trial Blazers for Kids (TBK) is a credit to the unwavering support of the Livingston community and the determination of those involved.
“One of the difficult lessons that we learned throughout our journey was that there are very few innovative treatment options available to pediatric cancer patients,” said Josh. “Only 4% of federal funding goes to pediatric cancer research. Since 1980, fewer than 10 drugs have been developed for use in children with cancer, and only three drugs have been approved for use in children. This realization along with Jake’s courage and resilience really inspired us to create TBK.”
Earlier this year, TBK awarded its first pediatric clinical trial grant in the amount of $50,000 to the University of Alabama at Birmingham (UAB) to help fund its HSV G207 Trial for Children with Cerebellar Brain Tumors.
The award was made in partnership with Cannonball Kids cancer, which also committed significant funding to this trial. Josh, who recently joined the board of Cannonball Kids cancer, said TBK intends to partner with the organization on future projects.
“The money that we raised to help fund the UAB trial was a real grassroots effort,” he said. “The Livingston community along with friends, family and many others has been so supportive of TBK. I think that is a testament to the way that Jake continues to touch the lives of so many as well as the importance of our mission.
“We are so thankful for everyone’s generosity and support. Our community has empowered us to honor Jake’s legacy by advancing innovative research and helping other children get access to cutting-edge clinical trials. This support has meant the world to us.”
In addition to the “dozens and dozens of individual donations” made toward TBK, the Kestler family also felt support from the Livingston Little League and its Knock Cancer Out of the Park initiative; local children who have dedicated their bar and bat mitzvah projects to fundraising for TBK; and the Livingston High School baseball program, which raises funds through sales of “Team Jake” bracelets.
Fundraisers have also been held locally through the Livingston Youth Organization for Human Services; Dara Seidman, the teen leader of Livingston’s Talenthood chapter; resident Maxine Davner, who has raised funds through her gift-swap program Maximize Boutique; Nicky D’s Softball tournament; and more.
“There are many other examples and countless individuals who contributed to Trial Blazers for Kids since we started the organization in 2019,” said Josh. “We cannot say enough about how wonderful our community has been in supporting us and our efforts.”
Josh explained that after surviving Leukemia at age seven thanks to a bone marrow transplant from his then-five-year-old sister, Lily, Jake was diagnosed with glioblastoma, one of the most deadly forms of brain cancer, at age 12.
Although doctors believed the brain tumor was likely a rare side effect of the radiation that Jake received as part of his Leukemia treatment, Jake had a tumor reoccurrence in the fall of 2017.
At the time, Jake’s family was told there were no further options for standard treatments; but Josh’s research into clinical trials provided him with a list of potential treatments he felt might be the most promising.
“We traveled to a couple of different hospitals in the hopes of obtaining access to one of these trials,” he said. “Unfortunately, Jake was deemed ineligible for each of these trials.”
During one of the failed trips, however, Dr. Gregory Friedman from UAB contacted the family saying he believed Jake would be eligible for the oncolytic virus trial. Shortly after Jake’s eligibility was confirmed, the family headed to Birmingham, Ala., where he participated in the UAB trail.
“The trial required that Jake have four catheters inserted into various areas of his brain where the modified virus (HSV G207) would be dripped in to attack the tumor,” his father said. “Jake spent almost a month in Alabama following this procedure.”
As Jake continued to travel to UAB every two months for magnetic resonance imaging (MRI) and checkups, a subsequent MRI showed that the tumor had developed holes from the oncolytic viral attack. Jake’s tumor then remained stable for more than a year.
“We credit this trial with materially extending Jake’s life,” said Josh. “Survival following a glioblastoma diagnosis can often be 12 months or less. Jake survived for two years and four months. While that will never be enough, we are deeply grateful for the extra time that we had with Jake and the many amazing experiences that he had during that time.”
Josh explained that the trial TBK awarded its first grant to “uses an innovative, immunotherapeutic approach to attacking brain tumors with an oncolytic virus.”
“UAB uses a modified version of the herpes virus, which is designed to attack and destroy cancer cells but not healthy cells,” he said. “The presence of the virus in the brain is also intended to alert the patient’s immune system to the presence of the tumor so that it can also attack cancer cells directly.”
He also noted that UAB has had some very promising results with this Phase I trial and that TBK believes the “potential for this treatment is significant.”
“If we can play a part in helping UAB advance this research while also helping other children get access to the same treatment as Jake, we will have advanced the mission of TBK and honored Jake’s legacy,” said Josh, adding that Jake did not typcically enjoy being the center of attention but was always willing to have his story told if it meant helping others. “Jake understood the importance of raising awareness and funding relating to pediatric cancer. As he said at the end of the ESPN segment on Knock Cancer Out of the Park, ‘I hope it helps other people who have cancer and kids can get better cancer treatment.’”
According to his father, Jake was “truly superhuman when it came to dealing with his illness both physically and emotionally.” Rather than complaining or asking “why me,” Jake “faced all of his treatments with a level of strength and courage that is almost unfathomable,” Josh explained.
“Jake had a lot of perspective and experience that I believe helped him through his brain cancer battle,” he said. “He had a remarkably positive outlook despite facing extraordinary obstacles. He tried to enjoy every day even when he was sick and was always smiling.
“As I have said many times, Jake was and is my hero. I learned so much from his strength and the way he lived life to the fullest. As his father, I could not have been more proud of him.”
Although the COVID-19 pandemic has significantly impacted TBK fundraising plans over the last year, the organization is currently considering various options for 2021 fundraising events that can be implemented either virtually or in an outdoor, socially distant setting. TBK also hopes to help fund at least one additional trial by the end of the year.
Any community members who have ideas for fundraising events, would like to volunteer for the organization or are interested in hosting a fundraiser is encouraged to contact Josh at firstname.lastname@example.org.
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