Jack Overton

March 1, 2015 – December 5, 2020

Diagnosed: October 29, 2018

On October 29, 2018, during an emergency visit to Johns Hopkins Hospital for a walking imbalance and facial droop, our sweet Jack was diagnosed with the most lethal form of pediatric brain cancer, Diffuse Intrinsic Pontine Glioma (“DIPG”).  At just 3 years old, he was given a devastating prognosis of 9-18 months with treatment, and as little as 1-3 months without treatment. Jack immediately underwent a biopsy which confirmed he had the deadly H3K27M tumor mutation, and a shunt was placed to relieve hydrocephalus (buildup of fluid on the brain). He also endured a separate medical procedure to place an access port in his chest.

With the assistance of Dr. Michael Koldobskiy and his incredible oncology team at Johns Hopkins, we sought out and enrolled Jack in the most promising clinical trial at the time, ONC-201 in New York. Under the supervision of Dr. Sharon Gardner at NYU Langone, Jack completed 7 weeks (30 rounds) of sedated radiation in conjunction with the experimental drug trial, and his tumor shrank by more than 40% by January 2019. As a result, Jack experienced an almost year-long “honeymoon period” when the tumor remained dormant and he appeared and felt like a normal little boy. 

We monitored the tumor via monthly clinic appointments in New York City and sedated MRI scans every 4-8 weeks. During this time, we did our best to squeeze in a lifetime of memories into only a few months, all while knowing the tumor would eventually rear it’s ugly ahead again. Jack became a big brother again in January 2019, took two trips to Disney World (one of them graciously sponsored by Make-a-Wish), attended preschool and forged friendships, played t-ball, made tons of funny TikToks with his sisters, learned to play video games with his big brothers, and spent countless hours building Legos. 

However, as we were warned, the tumor eventually returned in December of 2019. In an effort to slow tumor progression, Jack underwent a second round of sedated radiation (this time only 12 rounds, the maximum “safe” amount) at Johns Hopkins Hospital. Thankfully, he felt enough symptom relief that he was able to enjoy a third (!) trip to Disney World with extended family in January 2020, courtesy of a generous donation to the Defeat DIPG Gala, which was won and gifted to our family by fellow DIPG parent and author Mitch Albom.

As the world began to shut down due to COVID in the Spring of 2020, Jack was enduring several experimental chemotherapies which presented with harsh side effects including fatigue, painful mouth sores, weight loss, low platelet counts, and compromised immunity. Along with the rest of the world, our family quarantined for the better part of that spring and summer and soaked up every minute together with our sweet boy. We even bought a new house during this time, as it was important for us to make memories together with Jack in our new home while he was still with us. 

In September 2020, we received exciting and hope-filled news that Jack would become the 2nd patient to participate in a cutting-edge CAR T-Cell clinical trial at Seattle Children’s Hospital, under the care and supervision of one of our favorite doctors, Dr. Nicholas Vitanza.  For this trial, Jack underwent another brain surgery to modify his shunt into an Ommaya Reservoir, and traveled to Seattle for the catheter placement and actual T-Cell retrieval (two painful procedures in and of itself). 

Jack was required to remain “stable” while the T-Cells were being re-engineered in Dr. Vitanza’s lab across the country for the next two months, so that he would be able to physically endure the treatments when the time came. It was a race against the clock to keep the tumor growth and associated symptoms at bay. With every new neurological deficit, our hearts sank. During this time, Jack received Avastin chemotherapy infusions and the dreaded Dexamethasone steroids. The steroids caused an insatiable appetite and significant weight gain for Jack, as he quickly gained about 50% of his body weight. By the grace of God, when we got the call that Jack’s T-Cells were ready, his Lansky score (the formal criteria used to determine a patient’s well-being) was high enough that he was allowed to formally begin the trial. 

Our world of family, friends and supporters cheered as Jack received his first CAR-T cell infusion shortly before Thanksgiving of 2020. We had high hopes and our family relocated to Seattle in a long-term AirBNB. Unfortunately, time would not be on our side; our boy deteriorated rapidly after his second infusion. He lost his vital abilities to talk, walk, eat and swallow–all while remaining acutely aware of his decline. He quickly required round-the-clock oxygen, a feeding tube and heavy sedation to keep him comfortable in his final days. On December 2, 2020, we returned home on an early-morning cross-country flight with Jack. After a 25-month courageous battle against DIPG, God called our sweet boy home to Heaven just 3 days later on December 5, 2020.  

Though heartbroken forevermore, we remember Jack’s extraordinary resilience, determination, positivity and unbreakable faith in the face of adversity–and we vow to continue his fight until a cure is found. Through our family’s partnership with the ChadTough Defeat DIPG Foundation, we are committed to raising awareness of and funding for DIPG research, a disease that has seen few noteworthy improvements in treatment options or outcomes for over 50 years. On behalf of the entire Overton family, thank you for joining our fight. 

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