Debbie Eaise remembers the day her 18-year-old son, Kevin, walked onto the University of Pennsylvania campus where he is set to play for the Penn Quakers baseball team this fall. From Meiklejohn Stadium, Penn’s home field, you can pitch a baseball and reach Children’s Hospital of Philadelphia, said Debbie — a proximity so palpable that she could see the change in her son’s face and sense his comfort level at ease while he toured his future school.
As her husband, Kevin Sr., and others have noted, Kevin has come full circle. It was right there on the Penn-CHOP campus, after all, with its skyline of medical buildings, that Kevin and his family’s life changed inextricably, ushering in what Debbie describes as their “new normal.”
Eight years ago, CHOP oncologists discovered a tumor in Kevin’s brain that required an immediate and invasive surgery. Though the experience shook the New Jersey family of six, it brought with it more than just a new perspective on health. In the years following Kevin’s tumor surgery, the Eaise Family have become true research heroes, rallying to raise money for brain tumor research and cancer awareness through the Eaise Family Foundation.
They continue to support CHOP’s Cancer Center and the Center for Data Driven Discovery and Biomedicine (D3B), which was co-founded by Kevin’s neurosurgeon, Phillip “Jay” Storm, MD, now Chief of the Division of Neurosurgery at CHOP, and Adam Resnick, PhD, Director of D3B. With its extensive research program, including involvement in the Childhood Brain Tumor Tissue Consortium (CBTTC), CHOP remains at the cutting-edge of cancer research and treatment.
“When we got the news about Kevin’s brain tumor, we ended up with a feeling of ‘what do we do next?’” Debbie said. “Creating the Eaise Family Foundation was a way for us to turn something negative into something positive — to give back. We didn’t know what this world was until we were in it, and so I think it’s important to pay attention to the amazing things going on in the research right now.”
Through their remarkable efforts and solid presence, the Eaise family have become a big part of the brain tumor research community at CHOP. Their story, most recently shared by Kevin Sr. at a D3B meeting for Brain Tumor Awareness Month in June, continues to touch all who hear it.
From Seeing Double to a “New Normal”
In the summer of 2010, Kevin came home from his Little League baseball game reporting a case of double vision. While making a catch, he told his parents, he saw two baseballs instead of one. Concerned, Debbie and Kevin Sr. immediately took Kevin to a pediatrician and an ophthalmologist before being directed to CHOP. After consulting with doctors and undergoing a series of tests, the family met Dr. Storm, who gave Debbie and Kevin Sr. the news. Kevin had a tectal glioma, a tumor on his brain stem that was benign but could not be removed because of its location. He would need a surgical procedure to relieve some of the tumor’s complications. The time of the surgery: 3 o’clock that same afternoon.
Though at first shocked by the speed of the diagnosis and the decision, Kevin Sr. felt comforted by Dr. Storm’s straightforward and confident manner.
“We’re in a world that we didn’t choose to be in, and if I could trade it, I would,” said Kevin Sr. at the D3B meeting. “But it’s amazing to see the science going on here at CHOP, and for Dr. Storm to know that what he was going to do was going to take care of my son’s problems without any issues. At that point, I felt we were at the right place, this was going to happen, and [Kevin] was in the right hands.”
Meanwhile, Debbie remembers a positive moment from the day of her son’s diagnosis that continues to shine bright. Sitting anxiously in the waiting room of the Cancer Center at CHOP, she recalls holding her belongings tightly in her lap and dropping everything when a nurse called her name. But in the midst of her nervousness, another mother who also sat in the waiting room took Debbie’s hand and said, “You are going to get used to this. You will find your new normal.”
Those words still ring loud for Debbie today, who believes that the family’s “new normal” doesn’t just include Kevin’s adjustments to life with a tumor, but making an effort to give back to the cancer community — a world that they can now never forget.
For the Eaise family, that begins by supporting research.
Supporting Our Scientific Breakthroughs
Every February, Debbie and Kevin Sr. organize the Rally for Research Gala, a cocktail event that draws in more than 300 members of their community for a night of dancing, dinner, auctions, and more. The money raised through tickets and donations goes directly toward research at CHOP. According to Debbie, it’s important for people in the community to grasp the impact that their support for science can make. As a veterinarian who studied medicine herself, recent advances in genetics and genomics research continue to fascinate her.
“When I was in vet school, the science of genetics wasn’t there,” Debbie said. “And I remember seven or eight years ago at the beginning [of this experience], I was wondering how long it would take to sequence one genome. And now, we’ve come such a long way.”
But there’s another reason why breakthroughs in gene therapy mean a lot to Debbie, and it’s another story close to her heart. In the days surrounding Kevin’s diagnosis, CHOP had sent the family to a Phillies baseball game where, by pure coincidence, they sat next to the Whitehead family: Emily — who was then only 5-years-old — and her parents, Tom and Kari Whitehead.
It was the summer of 2010, and Emily had been recently diagnosed with standard-risk pre-b cell acute lymphoblastic leukemia (ALL). She had not yet undergone the experimental chimeric antigen receptor (CAR) T-cell therapy at CHOP that would save her life.
When Debbie compares how Emily’s health appeared at that game to how she thrives cancer-free today, she said, “It really hit home” to have met her. “It’s incredible to see [Emily] doing so well eight years later. So, this is one of my good memories. It’s one of the things that truly stuck in my mind about how genetic research can change lives.”
Kevin Sr. adds that he feels the same way. “The gene therapy that they’re doing is really exciting for us, sitting where we sit,” he said. “And also knowing that there are ways to treat tumors before they get to the point where it’s debilitating is what is most exciting for me. That’s what keeps us wanting to fund this.”
Giving Back and a Greater Good
With Kevin’s freshman year at Penn looming closer, life has been busy and blessed for the Eaise family. Even though the tumor still resides in Kevin’s brain, Debbie said that they have learned to manage it much like any chronic condition.
“We always say, you’re not that different from a diabetic who has to watch his sugar every day,” Debbie said. “Managing life with a tumor is just your new normal.”
The experience has also given Debbie insight into what she might tell other parents who have learned that their child has a brain tumor: “We were lucky enough that Kevin didn’t go through chemo, but whether it’s surgery or radiation or other treatments, the biggest thing is that it changes your life forever. You have to let yourself grow into that new normal.”
As for what Debbie and Kevin Sr. hope for their son’s future, the answer is simple and sweet.
“I just want [Kevin] to enjoy life and not stress about some of the big things that he’s unfortunately been a part of,” Kevin Sr. said.
“I always say to the kids, just be good people, and be productive,” Debbie added. “You just want to raise nice kids. So, I tell them, find a way you can give back and be happy.”
The Eaise Family Foundation has raised over half a million dollars for CHOP research as of 2018. But what they contribute to CHOP isn’t limited to monetary support. The entire family continues to help others see the importance of research into pediatric brain tumors, which are the leading cause of cancer-related deaths in children and adolescents. This campaign for awareness was expressed most poignantly at the seventh and most recent Rally for Research event by Kevin’s 16-year-old sister, Maria Eaise. Standing at a podium in front of the gala’s attendees, Maria spoke about why their support was so critical.
“Sometimes I think about what might have been if my brother’s brain tumor was different,” she said. “What if it was a few centimeters to the left, or to the right? Malignant? More aggressive? What if there was no option for treatment? I cannot imagine my life without my big brother, my friend, my confidante, and my protector. My family is lucky, but I recognize how unlucky some children are. Just 30 minutes away, children are fighting for their lives and searching for hope. Instead of talking about school or sports, these children are discussing scans, treatments, and time. Of all things — time. Parents are hoping for a miracle, a breakthrough in research that can give their children a chance to live. I cannot think of anything more important than advocating for these children.”
Want to help give back? Learn more about the Eaise Family Foundation and their Rally for Research Gala on their website.
Learn more about brain tumor research at chop.edu.