LIVINGSTON, NJ – Shortly before the two-year anniversary of the death of Livingston teen Jake Kestler, the childhood cancer foundation created in memory of him officially funded its first trial, which is also a follow-up to the therapy Kestler received in 2017 and which his parents think 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 to help others with his condition inspired thousands 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 continued support of the Livingston community and the determination of those involved.
“One of the difficult lessons we learned on our journey was that there are very few innovative treatment options available for pediatric cancer patients,” said Josh. “Only 4% of federal funding goes to childhood cancer research. Since 1980, fewer than 10 drugs have been developed for use in children with cancer, and only three have been approved for use in children. This realization, along with Jake’s courage and resilience, really inspired us to create TBK. “
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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 the HSV G207 study for children with cerebellar brain tumors.
The prize was awarded in conjunction with Cannonball Kids Cancer, which has also committed significant funding to this study. Josh, who recently joined the Cannonball Kids Cancer board, said TBK plans to work with the organization on future projects.
“The money 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’s a testament to the way Jake continues to touch the lives of so many, as well as the importance of our mission.
“We are so grateful for everyone’s generosity and support. Our community has enabled us to honor Jake’s legacy by promoting innovative research and helping other children access cutting-edge clinical trials. This support has meant everything to us. “
In addition to the “dozens and dozens of individual donations” made to 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 money through the sale of “Team Jake” bracelets.
Fundraisers have also been run 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 money through her gift-swap program Maximize Boutique; Nicky D’s softball tournament; and more.
“There are many other examples and countless individuals who have contributed to Trial Blazers for Kids since we started the organization in 2019,” said Josh. “We cannot say enough about how wonderfully our community has supported 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 at age 12 with glioblastoma, one of the deadliest forms of brain cancer.
Although doctors thought the brain tumor was likely a rare side effect of the radiation Jake received as part of his leukemia treatment, Jake developed a new tumor 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 gave him a list of possible treatments that he believes could be the most promising.
“We traveled to a number of different hospitals in hopes of accessing one of these studies,” he said. “Unfortunately, Jake was not eligible for any of these studies.”
During one of the failed trips, Dr. Gregory Friedman of UAB, however, contacted the family and said he thought Jake would qualify for the oncolytic virus test. Shortly after Jake’s eligibility was confirmed, the family left for Birmingham, Ala., Where he competed in the UAB trail.
“The trial required Jake to have four catheters inserted into different parts of his brain where the modified virus (HSV G207) would be instilled to attack the tumor,” said his father. “Jake spent nearly a month in Alabama doing this procedure.”
While Jake traveled to UAB every two months for magnetic resonance imaging (MRI) and controls, a subsequent MRI showed that the tumor had developed holes from the oncolytic viral attack. Jake’s tumor remained stable for over a year after that.
“We credit this process with actually extending Jake’s life,” Josh said. Survival after a diagnosis of glioblastoma can often be 12 months or less. Jake survived for two years and four months. While that will never be enough, we are immensely grateful for the extra time we had with Jake and the many wonderful experiences he had during that time. “
Josh explained that the TBK study has awarded its first grant to “use an innovative, immunotherapeutic approach to attack 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 promising results with this Phase I study and that TBK believes the “potential for this treatment is significant”.
“If we can play a role in helping UAB advance this research, while helping other children access the same treatment as Jake, we will have furthered TBK’s mission and honored Jake’s legacy,” said Josh. adding that Jake was not typical. enjoyed 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 for childhood cancer. As he said at the end of the ESPN segment on Knock Cancer Out of the Park, “I hope it helps other people with cancer and children get better cancer treatment.” ”
According to his father, Jake was “truly superhuman in dealing with his illness, both physically and emotionally.” Instead of complaining or asking “why me,” “Jake” faced all of his treatments with almost unfathomable strength and courage, “Josh explained.
“Jake had a lot of perspective and experience that I believe helped him through his battle with brain cancer,” he said. “He had a remarkably positive outlook, despite extraordinary obstacles. He tried to enjoy every day, even when he was sick, and was always smiling.
“As I’ve said many times, Jake was and is my hero. I have learned so much from his strength and the way he has lived life to the fullest. As his father, I couldn’t have been more proud of him. “
While the COVID-19 pandemic has had a significant impact on TBK’s fundraising plans over the past year, the organization is currently considering several options for fundraising events in 2021 that could be conducted virtually or in a socially remote setting. TBK also hopes to help fund at least one additional trial by the end of the year.
Community members who have ideas for fundraising events, want to volunteer for the organization, or are interested in hosting a fundraiser are encouraged to contact Josh at email@example.com.
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