Bentley's Story | Brain Tumors
It was the summer of 2018 in Mecosta, Mich. (population, 457) when 6-year-old Bentley Thatcher’s parents noticed a tremor in his left hand while their son was playing T-ball.
The dark irony of such an innocent summer game surfaced a few months later, when an MRI revealed that Bentley had a tumor the size of a softball growing in his thalamus, the part of the brain that relays sensations like touch, pain and temperature. Four days later, a biopsy confirmed the worst. Bentley had a rare, life-threatening cancerous tumor known as a grade IV astrocytoma, with a genetic profile that is usually considered terminal upon diagnosis.
Bentley’s mother, Ashley, was panic stricken. Her husband, Allen, came home immediately from North Dakota, where he was working on an oil rig.
Neurosurgeons in Michigan deemed Bentley’s tumor inoperable, due to its large size and deep location within the brain.
“We didn’t think we were going to have him for very long.”
“He was only six, and we didn’t think we were going to have him for very long,” says Ashley, “It was devastating.”
Casey Madura, MD, a pediatric neurosurgeon at Helen DeVos Children’s Hospital in Grand Rapids, Michigan told the Thatchers that the likely outcome of performing brain surgery did not justify the risks, which included paralysis.
“If Bentley had any chance of a meaningful surgical outcome,” says Dr. Madura, “I told the family I would recommend they see someone with more experience.”
Having trained as a neurosurgery resident at the University of Wisconsin in Madison from 2008-2015, Dr. Madura had just the team in mind for Bentley – the UW Health neurosurgery program.
Once the UW Health team learned of Bentley’s urgent situation, adult and pediatric neurosurgery clinicians quickly collaborated to plan the young boy’s surgery in Madison.
Mustafa Baskaya, MD, a UW Health adult neurosurgeon with extensive experience in operating on deep tumors, worked closely with Andy Stadler, MD, a pediatric neurosurgeon based at UW Health’s American Family Children’s Hospital.
“We embrace collaboration across the adult and pediatric teams if the patient can have a better outcome,” says Dr. Baskaya, “With expertise in microsurgery and deep-seated tumors on the adult side and age-appropriate experience on the pediatric side, we can offer the patient the best of both worlds.”
“Very few centers collaborate this way,” adds Dr. Stadler, “and we both felt Bentley would emerge better off because of it.”
Bentley Comes to Madison; UW Team Removes Tumor
Drs. Baskaya and Stadler reviewed Bentley’s brain MRI. Working as the captains of a large surgical team spanning University Hospital and American Family Children’s Hospital, the two neurosurgeons were confident they could safely remove Bentley’s tumor with minimal risk of paralysis, giving Bentley more time and the best chance for life-prolonging care after surgery.
“Not too many medical centers – including children’s hospitals – would have operated on Bentley,” says Dr. Stadler. “With Dr. Baskaya’s expertise in highly complex tumors and mine in pediatric neurosurgery, we had the team and medical infrastructure to give Bentley and his family the ray of hope they had been searching for.”
On October 29, 2018, the Thatchers woke up knowing that their son would undergo a day-long brain surgery.
“We were on edge, but Dr. Baskaya and Dr. Stadler helped prepare us,” Ashley recalls. “They were calm and confident, and told us their goal was to remove 100 percent of the tumor.”
By the time surgery ended that day, the surgeons had removed 85 percent of Bentley’s tumor. There were no signs of paralysis, but Bentley was not happy when he was told that a second surgery would be needed to remove the remaining 15 percent.
“Bentley kind of panicked at first, but Dr. Baskaya explained it so well to him,” Ashley recalls. “He said they just needed to unzip the zipper-like incision on Bentley’s head and get the rest of the tumor out.”
Just three days after that second surgery, Bentley and his parents went home to Michigan – just in time for a very special day.
“He was supposed to be hospitalized a few more days,” says Ashley, “but Dr. Baskaya insisted that Bentley should be home for his birthday the next day. I thought that was just incredible.”
Bentley Enrolls in Clinical Trial After Cancer Recurs
Unfortunately, as is often the case with this grade of tumor, Bentley’s cancer came back in February 2019. That same month, the Thatchers took their son to C.S. Mott Children’s Hospital in Ann Arbor, Michigan, where he enrolled in a Phase I clinical trial of a new drug called ONC201 – an oral treatment that is believed to uniquely bind itself to a dopamine receptor (DRD2) and slow the ability of the tumor to survive and spread.
Carl Koschmann, MD, a pediatric neuro-oncologist at the University of Michigan, says that although Phase I of the trial focuses only on patient safety, there are signs that patients such as Bentley are experiencing tumor shrinkage.
“Bentley has been stable since going on the study,” says Dr. Koschmann, who graduated from the University of Wisconsin School of Medicine and Public Health. “For now, the study seems to indicate that the drug is safe. Our hope is that it also will be proven effective so children like Bentley can live even longer than they would without the drug.”
Now 7, Bentley is doing OK, but wishes he could enjoy more normal children’s activities. He is often sore and tired. It’s not ideal, but his parents cherish every day they have with their son.
“Bentley would not be here today without Dr. Baskaya, Dr. Stadler and the team at UW Health,” says Ashley. “You cannot put into words how grateful we are. They have given us extra time with our child that is just priceless.”