After a yearlong battle with an aggressive brain tumor, Harry Lorusso faced one final challenge on his final day of treatment.
Patients typically celebrate finishing treatment at UPMC Hillman Cancer Center by ringing a bell in front of family, friends, and their care team. But when Harry completed a clinical trial in April 2020, visitor restrictions brought on by the COVID-19 pandemic scrapped those plans.
So Harry’s treatment team improvised by moving the ceremony outdoors. Harry’s wife, friends, doctors, and nurses stood socially distanced and cheered as he rang the bell.
“I rang the heck out of that bell,” Harry says. “Because when you can’t shake anyone’s hand, or give anyone a hug, or embrace them or thank them, that was my way of just passionately ringing that bell to show them just how much I appreciate everything they’ve done for me throughout this treatment plan so far, and probably what they’ll continue to do moving forward.”
That type of support was nothing new for Harry. It was the same love and care that carried him through a long battle with a deadly disease.
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‘It Came Out of Nowhere’
Harry was born in Florida and played college football in West Virginia. He moved to Pittsburgh after graduation and graduated from culinary school, eventually taking a job in the food industry.
He was living on the North Side with his fiancée when his sister came up to visit in March 2019. He cooked dinner and afterward started to feel tired and nauseous. He went upstairs to go to the bathroom and felt worse.
“All of a sudden, I started to feel like I was going to get sick,” Harry says. “This is a home I’ve owned for the last three years, and in the moment, I couldn’t remember where the bathroom was in my house. Things really started to go blank for me. I felt my body seizing up a bit. I went out to kind of scream for my fiancée, and I couldn’t get the words out. I leaned up against the wall and my body was seizing up, so I fell to the ground and crawled to the bathroom.”
Harry’s fiancée, Dana, heard him. She rushed him out of the house, into the car, and to the emergency room on a cold, rainy night.
An MRI showed Harry had a brain tumor, and a biopsy confirmed it was glioblastoma – a more aggressive, deadlier tumor.
Harry had never dealt with serious illness or injury before. He’d had no symptoms, no warning signs.
“It came out of nowhere,” Harry says.
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‘Let’s Give This Thing a Run for Its Money’
Shortly after getting his diagnosis, Harry Googled “glioblastoma” on his cell phone.
It was one of the final times he did.
“Nothing good comes up,” he says.
Glioblastoma, or GBM, is one of the most complex, aggressive, and deadly brain tumors. It has a five-year survival rate of under 10% and also can cause brain damage.
Despite what he read about the disease, Harry remained calm and positive. He was ready to fight.
Harry’s family had flown up from Florida and knew his diagnosis before he did. In the days and weeks that followed, many more of his loved ones flew up to Pittsburgh and stayed to support him.
“I knew I had the support system around me,” Harry says. “The first thing that came to mind was let’s get a plan in place and give this thing a run for its money.”
Harry and Dana had planned on a June 2019 wedding, but they decided not to wait. They got married March 29, 2019 – a week after he was released from the emergency department, in front of close family and friends. The stitches from his biopsy were still in his head.
“It was one of the most intimate, fun experiences,” Harry says. “It was the greatest day of my life.”
After researching cancer treatment centers, Harry decided on UPMC. He wanted an aggressive trial, and with Nduka Amankulor, MD, director of Adult Neurosurgical Oncology at UPMC Hillman Cancer Center and his team, Harry got one. It began with surgery to remove the tumor a week after his wedding. Then doctors inserted a virus into the tumor bed to kill any remaining cancer cells. Then came chemotherapy, radiation, and immune therapy.
“They throw everything at the tumor,” Harry says.
Fatigue became Harry’s most common symptom. He experienced it during every aspect of his treatment. But he made a vow to get out of bed every day, no matter how tired he felt.
“I caught myself early on, waking up in the morning and staying in bed all day,” he says. “So my wife and I came up with a plan where my job was, every morning when I woke up, I got out of bed and I made the bed. Once the bed was made for the day, you don’t get back into bed. And it was great. It was something so simple.”
In the most difficult days of his treatment, he kept one image in mind: one day holding his grandchild. He knew such a moment would be years away, so it gave him a positive long-term goal to aim for.
“I would just take my brain to that point of holding my grandchild,” Harry says. “Because that means I was present for the entire lifetime prior. Dana and I getting pregnant, having a child, my child growing up, my child meeting someone, my child having a child.
“That was really that focus point that I would always take my brain when times were tough or I needed something to focus on down the road and be optimistic.”
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‘An Appreciation for Every Single Moment’
In June 2019, amid his treatment, Harry and Dana held their second wedding. They wed in front of 250 friends and family members at the Pittsburgh Opera.
He continued the at-times grueling treatment, dealing with the side effects that went along with it. He took training sessions at a gym on Pittsburgh’s North Side and started boxing lessons. He also made some lifestyle changes, cutting out most sugar from his diet and keeping his cell phone in a different room when he went to bed.
As the final day of his clinical trial approached, Harry wondered if he wanted to go through with the bell-ringing ceremony. During his treatment, he always tried not too get too high or too low. He worried it might seem arrogant to ring the bell.
As the big day approached, his perspective changed.
“I realized it had nothing to do with me,” Harry says. “It’s the people who rang that bell before me, the people who are going to ring it after me, the doctors, the nurses who took care of me every single day on that floor where the bell resides. It was my way of showing appreciation to them.”
So even though COVID-19 restrictions meant he couldn’t have a traditional ceremony, he made the most of it.
In fact, he’s making the most out of everything. He and Dana launched a nonprofit, the Outlier Fund, to help people diagnosed with glioblastoma. The couple also are beginning to plan for their first child.
“People usually look at me like I’m crazy when I mention this, but if given the opportunity to go back and change this, I don’t think I would,” Harry says. “It has been the most challenging year of my life, our life, but it is by far the most fulfilling. It’s because our level or gratitude towards every moment of every day, and just being alive and being present in every moment.
“We didn’t have that before this. I value little things that I didn’t before. I have an appreciation for every single moment.”
National Brain Tumor Society, About GBM. https://braintumor.org/take-action/about-gbm/
UPMC Hillman Cancer Center provides world-class cancer care, from diagnosis to treatment, to help you in your cancer battle. We are the only comprehensive cancer center in our region, as designated by the National Cancer Institute. We have more than 70 locations throughout Pennsylvania, Ohio, New York, and Maryland, with more than 200 oncologists. Our internationally renowned research team is striving to find new advances in prevention, detection, and treatment.