June 21, 2013 – December 3, 2023
Diagnosed: November 17, 2022
In November of 2022, a brave and big-hearted nine-year-old boy named Finn Cusick of Maryland had his life changed forever. Finn is known for his courage, for standing up for his friends and always finding solutions to any challenge. Before his diagnosis, he was always building with any materials he could find, riding his bike, and playing baseball.
“Finn always fights for justice and can always find his voice when something isn’t right,” said his mom, Carrie. “We always say Finn could be lost in the wilderness and live to tell the tale. He is resourceful, insightful, and a solutionist.”
One morning, as he descended the stairs, Finn experienced an odd sensation in his legs, which he described as “weird and tingly.” Initially, his parents, Carrie and Greg, not suspecting anything serious, attributed it to growing pains. However, over the next few days, his condition worsened, and he began limping and losing strength in his left hand.
Concerned, Finn’s parents took him to the pediatrician, who sensed that something was wrong. Without delay, they were sent to Children’s National Hospital, where they met with the stroke team. Soon after, Dr. Roger Packer entered the room and introduced himself as a neurologist. The growing sense of unease settled in Finn’s parents’ hearts.
The following days were filled with anxiety and uncertainty. Finn underwent various tests, including a CT scan and an unsedated MRI. The results showed a mass at the back of his brain, but more testing had to be done before doctors could give the family any clear answers.
“Finn made it about 45 minutes before we both were crying,” said Carrie. “Him from having to lay still in an incredibly loud, traumatic machine; and me from trying to keep him calm and then hearing him scream in terror.”
The next day, Thursday, November 17, 2022, Dr. Packer and his team brought Finn’s parents into a room and delivered the devastating diagnosis. Finn had diffuse intrinsic pontine glioma (DIPG), an aggressive brain tumor for which there was no cure.
“I remember asking if Finn would live to see 15,” said Carrie. Dr. Packer gave us a hopeful answer, but the other doctors were shaking their heads. It was all a blur.”
Neither of Finn’s parents had heard of DIPG before, which is not uncommon, so they turned to social media to learn everything they could about the horrifying disease. Carrie and Greg began to reach out to other parents who had faced similar battles, looking for guidance and support.
“I even private messaged Dr. Matt Dunn while we were in the hospital,” said Carrie. “At the time I didn’t know what time it was in Australia and I was desperate. But he wrote back almost immediately and told us we were in the best hands possible. He was the first parent I contacted out of many since we started this journey.”
Another parent recommended My DIPG Navigator, a ChadTough Defeat DIPG Foundation program designed to give free, individualized guidance for patients and their families facing a pediatric brain cancer diagnosis.
“Our nurse navigator, Leslie, has been wonderful and always checks in on us,” said Carrie. “She really cares about these kids.”
The family was really hopeful to get Finn into the promising CAR T-cell trial in Seattle, Washington under Dr. Nick Vitanza. The trial works by drawing blood from the patient, separating out the T cells from the plasma, then reengineering them to attack cancer cells before infusing them back into the body. But because Finn had recently undergone radiation, he had swelling and necrosis in his brain, which disqualified him for the trial at that time.
In February, 2023, Finn began the PNOC022 trial, a cutting-edge treatment combining various drugs, including the promising oral drug ONC201. This revolutionary approach aims to target cancer cells without harming the heathty ones. August marked six-month-post radiation and six month into the trial – which meant it was time to do another scan of Finn’s brain to see if the medication was doing its job. This milestone created both hope and trepidation as the Finn family waited for the results. A rollercoaster of emotions swept through them, clinging to prayers for a positive outcome while fearing the worst.
“I fell panic all day, every day,” said Carrie, remembering those tense hours leading up to Finn’s appointment. “I learned the words ‘scanxiety’ from other DIPG parents, and it is very real.”
On August 4, Finn’s oncologist called with both good and bad news. The MRI showed a possible, very small, new area of concern in Finn’s lateral ventricle, that doctors will be watching closely. The good news is that DIPG tumor in his pons is stable and appears to have improved in the areas of previous necrosis, getting Finn one step closer to being able to participate in the highly sought Car T-cell clinical trial.
If accepted into the trial, the family will have to travel across the country for Finn’s treatment, readily willing to do whatever it takes as long as Finn is able and willing to fight.
“Sometimes at night, before he falls asleep, Finn will talk about dying,” said Carrie, heartbreak echoing in every word. “He will say ‘mom, I’m scared. ‘Am I going to die? Please don’t let that happen to me.”
Drawing from a strength she never knew she had, Carrie tells her son that she will do anything she can to fight for his life. As they continue their battle against this relentless disease, the Cusick family remains determined to explore all possibilities and is prepared to travel across the country if needed, embracing every opportunity to secure the best possible outcome for Finn’s future.
