In the United States, if a disease is diagnosed in less than 200,000 people, it’s considered a rare disease. Advocates for those who suffer from rare diseases have designated the last day of February every year as Rare Disease Day. This is an acknowledgement that is designed to raise public awareness about rare diseases in hopes of generating adequate health care, treatment options and opportunities for social support. According to the National Organization of Rare Disorders or NORD, all pediatric cancers and 500 types of other cancers are considered rare diseases. The NORD also exposes the grim reality that more than 90% of rare diseases do not have FDA approved treatment options in place.
One in 20 people will acquire a rare disease at some point in their lives. Trent Berry of Fulton experienced such a diagnosis. In the spring of 2020, Berry, a 2017 graduate of G. Ray Bodley High School, began experiencing facial paralysis while pursuing a degree at SUNY Oswego. An MRI and CT scan showed the presence of a mass on the left side of Berry’s temporal lobe. After the mass was biopsied, Berry was given a tragically life changing diagnosis. Like Senators John McCain and Ted Kennedy, President Joe Biden’s son, Beau Biden, Former Basketball Coach Paul Westphal as well as fellow G. Ray Bodley High School Alumni Nick Ippolito, Mike Merritt and Chris Ely before him, Berry was battling Glioblastoma Multiforme. With its highly aggressive and malignant nature, Glioblastoma Multiforme or GBM is considered a grade IV brain tumor. While forming in the glial cells of the brain, a GBM brain tumor can easily begin spreading to common brain cells. On average, 12,000 people are diagnosed with Glioblastoma Multiforme in the United States every year. Standard treatment options can include the combination of surgery and radiation with chemotherapy or immunotherapy. Some GBM patients can also benefit from use of a non-invasive device known as Optune. Sadly, the current average survival time for those utilizing those treatment options is just under 15 months, 25% of Glioblastoma Multiforme patients survive more than a year while only 5% survive beyond five years.
With optimism and determination, Berry underwent surgery in May 2020 at Upstate University Hospital in Syracuse to attempt to remove the tumor. Neurosurgeons face key obstacles when trying to remove brain tumors. They must consider how much to remove with respect to where the tumor is located. Perhaps most critically, Neurosurgeons must also be able to differentiate between common brain cells and cells related to the tumor. They do not want to risk removing too much in either case and causing permanent struggles for the patient. Doctors were able to remove more than 95% of Berry’s tumor which allowed his surgery to be considered a success. Despite the encouraging outcome, surgery left him with challenges that he would later begin to overcome. Speech therapy was needed for Berry to be able to speak at a typical pace again. While occupational and physical therapy was needed for his overall strength and to help him restore use of the right side of his body.
The expectation is that surgery alone will not remove 100% of the cells related to Glioblastoma Multiforme. Therefore, following surgery, Berry began radiation and chemotherapy regiments that lasted throughout the summer of 2020. Later, Berry required the use of the Optune. This is a device that attaches to patients’ heads as a cap and needs to be worn throughout numerous hours each day. As they wear the device, it sends electric treating fields to the area around the tumor to attempt to halt its spreading capabilities. During this time, he was given a booklet titled “Voicing my Choices” to fill out with his family. The opportunity to fill out this paperwork gave him a forum to express what he hoped for in terms of his future healthcare needs and likely eventual passing.
Berry’s work at Fulton’s Mimi’s Drive-In along with serving as a youth soccer and basketball coach helped to encourage tremendous local support. In October, 68 cars drove through a planned drive-by parade for Berry’s 21st birthday to allow the community to offer him and his family its best wishes. Around the same time, fundraising efforts began to help Berry’s family cover mounting medical expenses. Between sales of -Berrystrong bracelets and keychains, raffles at Mimi’s Drive-In and a gofundme page, more than $20,000 was raised. According to Berry’s mother, Kate Zarichny, their entire family will be forever grateful for all of the generosity the Fulton community has blessed them with. “The support shown to us time and again from our community was truly overwhelming and humbling,” Zarichny said. “From the fundraisers to dinners and the amount of people that showed up for Trent’s 21st birthday parade just to show support and solidarity. It filled our hearts and brought every last one of us to tears. But for our friends, family, neighborhood, and community to come out in droves for us the way they did? There are no words that adequately express our gratitude to them all. I’ve tried to personally thank everyone who came to our sides and helped us stumble through. But most importantly I’ve aimed to thank everyone for loving our son the way they do,” she added.
Current standard treatment options can temporarily shut down and remove tumors for some of the patients battling Glioblastoma Multiforme. Unfortunately, there is no cure yet. Despite not entirely removing the tumor, surgery with radiation, chemotherapy and use of the Optune proved to be an effective preliminary combination for Berry. Unfortunately, in January 2021, he was told that a new tumor had formed along the center of his cerebellum and brain stem. Given its location, surgery to attempt to remove the new tumor would be riskier this time around. Although understandably discouraged, Berry was not about to back down from this obstacle either. Doctors again performed successful surgery on him at Upstate University Hospital that resulted with the removal of more than 80% of the new tumor. Sadly, Doctors soon discovered that the malignancy of the new tumor was more intense than anticipated which left them with little or no treatment options. Berry’s mother was given the daunting task of giving him the terrible news. She apologized to him while doing so and like the champion he was known to be, he told her it wasn’t her fault. Berry succumbed to Glioblastoma Multiforme on Febr. 21 surrounded by his family. “Trent never complained during his journey with GBM,” Zarichny said. “Only with encouragement early on did he once say he was angry that it was interfering with his schooling. Trent never asked, “why me?”. He knew the cancer response was “why not you?” He faced everything head on and with integrity,” she said.
Berry will be posthumously awarded with an honorary degree from SUNY Oswego this spring. Upon the news that doctors were left with little or no treatment options for Berry, Zarichny referred to the “Voicing my Choices” paperwork that she helped him fill out. While going through this paperwork, Berry and his family learned of the possibility of donating postmortem brain tissue to the Gift from a Child pediatric brain cancer research initiative. The opportunity to develop the awareness and advancements that could help to save other peoples’ lives was one he wasn’t about to pass up. After Berry’s passing, Zarichny followed through on her oldest sons wish to have his entire brain and tumors donated for scientific research. “Trent always had it in his mind that no matter HOW things went, he wanted to help to try and ensure that nobody else would face the terror and uncertainty of GBM,” Zarichny said. “Even in his most trying times he thought of others. Of the future. Trent found the lack of knowledge surrounding GBM to be unacceptable and mind boggling. And he vowed to try and do something about it,” she added.
Anyone with inquiries or desire to offer additional support for developmental health care and community services can visit www.rarediseases.org