A Cancer Diagnosis Brings Lifelong Connections

Categories: Patient Families
Ava reflects on her experience with ALL:
“Before I was diagnosed, I would see tv ads with bald kids and think, ‘That’s so sad’…then I’d walk away.” But her perspective changed after her own harrowing fight for her life.

At the age of 14, Ava’s focus was what you would expect for a beautiful, active girl preparing to head into high school. She loved hanging out with her friends, hunting with her dad and playing lacrosse. But that focus was about to change.

Ava had a sinus infection, and her pediatrician had treated it with two rounds of antibiotics. It just wouldn’t go away. Then Ava started experiencing severe pain in her right knee. She had always been a strong girl with a high tolerance for pain, so at first the discomfort didn’t cause her or her parents much concern. But the pain persisted and then other symptoms began to appear. Ava would come home from school feeling lethargic and collapse on her bed for hours. The once go-getter teen became fatigued and unable to enjoy the things she loved. Ava’s pediatrician tested her for mononucleosis…twice.

Giulia, Ava’s mother, was persistent in pressing for answers about her daughter’s condition. Mother’s intuition, and her training as a nurse, told Giulia that something wasn’t right. During one visit, the pediatrician pressed on Ava’s right knee, and she yelped with pain—a red flag from this girl with a high pain tolerance. She was scheduled for an MRI, and the pieces started to fall into place.


Piecing Together a Puzzle

Ava (front, center) pictured with her Clinic family: Amanda Zuse, APRN, Natasha Frederick, MD, and Tricia Sullivan, RN.

The next morning, on December 20, 2017, Ava’s parents received a phone call that would start a three-year journey for their family. Halfway through her freshman year of high school, Ava was called out of class. Her parents picked her up and drove directly to Connecticut Children’s.

Just a 20-minute drive from her hometown, Ava recalls, “It was the longest car ride of my life.” She knew something was wrong, as her family sat in silence for the entire ride. When they reached the hospital, they took the elevator up to the 5th floor and entered the Center for Cancer & Blood Disorders for the first time. While sitting in the waiting area, Ava saw three nearly-bald toddlers, with a couple random sprouts of hair on their little heads, playing together on the floor. She remembers thinking, ‘These poor little kids have cancer—how sad.’ But Ava had not connected their diagnosis to her own condition.

Ava and her parents, Giulia and Jamie, were escorted into a family conference room to meet with oncologist Natasha Frederick, MD, along with one of the Center’s social workers. After reviewing Ava’s MRI results and bloodwork, Dr. Frederick shared the diagnosis with the family: Ava had acute lymphoblastic leukemia (ALL), a rapidly spreading blood cancer.

Time seemed to stop in that moment, as Ava didn’t know how to process what she just heard. Jamie, who Ava describes as a tough outdoorsman, leaned over to his baby girl and said, “I’m so sorry kid,” as tears welled in his eyes.

Finding Hope Away From Home

Ava rests after one her many difficult chemotherapy sessions.

The Center for Cancer & Blood Disorders soon became Ava’s second home. She was scheduled for surgery where a port-a-cath was implanted so chemotherapy could start immediately. Although there was relief to finally know what was wrong, Ava was heading into the hardest months of her young life. Her lush, long brown hair began to fall out. She lost all the physical strength built during weight training, hunting with her dad, playing lacrosse and working out. But worst of all, Ava’s spirit was broken.

The staff at the Center for Cancer & Blood Disorders knew that Ava needed more than the chemotherapy that was addressing her leukemia. Social connections and shared experiences are important to all children but especially teens. During an inpatient stay at Connecticut Children’s, Ava met Lana in the Teen Lounge, and the girls instantly connected. Then came new friendships with Grace and Axel. Ava found a new resilience to fight her illness with the backing of her new lifelong friends.

At the same time, Ava says she gained a second family. Not only did the staff give her the therapeutics and care she needed, they gave her comfort and hope. “They became more than just nurses and doctors, they became family,” says Ava. “My one sense of hope was with them, and I trust them with my life…literally.”

Getting Worse Before Getting Better

Ava is comforted by her mother, Guilia, during a difficult inpatient stay.

Hope and healing were exactly what Ava needed. Her initial chemotherapy had worked, and the ALL was in remission. Her treatment shifted to interim maintenance chemotherapy which delivered high doses of chemotherapy followed by inpatient monitoring. “It was awful,” recalls Ava. “I would have to stay in the hospital for a week at a time.” She then graduated to delayed intensification (DI) chemotherapy, which hit Ava hard causing frequent vomiting with no relief. “I was a walking skeleton,” says Ava, whose weight dropped to 80 pounds while standing 5 feet 1 inches tall.

Ava fell into septic shock and ended up in the Pediatric Intensive Care Unit for three days toward the end of summer 2018. She stayed in the hospital for over a month, due to having virtually no immune system and tremendous pain. Ava was so weak that she relied on TPN—total parenteral nutrition delivered intravenously—to address her weight loss and inability to eat. She was also on High Flow Oxygen and had to learn to walk again. Ava was prescribed heavy steroids which caused “moon face,” a common side effect of the medication. But Ava credits her Connecticut Children’s family for bringing her through this difficult time: “No matter what was happening with me, they always figured it out.”

Ava spent time writing and reflecting during her many inpatient stays while receiving treatment for acute lymphoblastic leukemia (ALL).

Eventually, Ava progressed to maintenance chemotherapy. It left her with no energy or interest in seeing her friends outside the hospital. But after several months of maintenance, Ava recalls, “There wasn’t anything bad in my spinal fluid and my labs started to look good.” In April 2020, Dr. Frederick delivered the news that Ava and her family had been hoping to hear for two-and-a-half years: Ava had come through a challenging treatment course, and her treatment was complete.

A Return to Normal

Ava didn’t know how to feel when she heard the news. While she was hopeful, there was hesitation about how to transition back into a life and be a ‘normal’ teen again. After spending so much time in her second home with her Clinic Family, she couldn’t imagine only going in monthly for bloodwork to confirm that she is still healthy.

Ava reflects on what her care team meant to her: “My one sense of hope was with them, and I trust them with my life…literally.” She is pictured with Tricia Sullivan, RN, Amanda Zuse, APRN and oncologist Natasha Frederick, MD.

Ava’s voice fills with warmth as she explains, “You get so tight because they save your life—they give you comfort and knowledge. They are family.” Now, when Ava arrives for her monthly check up, she and her caregivers spend 15 minutes catching up on life before they even start their medical talk. “Amanda, my APRN,” says Ava, “is like my second mother.”

While much of the world looks back at 2020 and keeps count of the events cancelled and the trips not taken, Ava has a different perspective: “Summer 2020 has been the best four months of my life!” She is eating healthy, has rebuilt her strength and once again has the energy to hang out with her friends. She’s even back to bantering with her brothers, Jake and Jed. “They were so careful with me when I was sick,” says Ava with a knowing smile, “It’s kind of nice to be able to fight with them again.”

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