Malia Jusczyk was just two-and-a-half years old when she began suffering from intense stomachaches. At first, her parents – Glen and Megan – thought it was just a bug. But as the little girl’s pain worsened, and she grew more and more withdrawn and listless, the Jusczyks became increasingly worried.
Their first visit to a doctor near their home in Florida led to a misdiagnosis. But a middle-of-the-night follow-up ultrasound at her parents’ insistence showed little bumps on her kidney. Doctors thought it might be a urinary tract infection, but Megan knew something was really wrong. Glen recalled, “It was a mother’s intuition.” Megan took Malia to a nephrologist (a kidney specialist), who ordered a scan and warned them that there was a minute chance it could be cancer.
The scan revealed a devastating diagnosis: Neuroblastoma, a cancer of the nervous system. Malia had a tumor the size of a grapefruit in her stomach, which had flattened like a pancake. And it had spread into her spinal cord. “The doctor told us, ‘You’re going to be here a long time,’” Glen said.
After a bone marrow biopsy at Arnold Palmer Hospital in Orlando, the news got worse. “The doctor just started crying,” Glen remembered, when he shared the results. “He said, ‘I have a 5-year-old at home. This breaks my heart, I’m so sorry, it’s Stage 4.’”
Neuroblastoma is one of the most common cancers among children, but a Stage 4 diagnosis is rare. Malia’s cancer was in her bone marrow, femur and spine. It had killed her adrenal glands and right kidney, and it was growing fast.
Within days, the family left for Boston, choosing the Oncology Group at Children’s Hospital for Malia’s care. Her treatment plan included six rounds of chemotherapy, a grueling 10-hour tumor resection surgery, removal of her adrenal gland and kidney and a stem cell transplant. “Her tumor was sitting in the nerve fibers,” Glen said. “The doctor said it was like trying to cut dried gum out of a carpet without damaging the rug fibers.”
The family finances were thrown into chaos, as they struggled to keep their home in Florida and reestablish themselves in Boston. They needed a place to stay near the hospital, and the Ronald McDonald house served as a temporary home base. But after 45 days, Malia was still in the hospital and the family needed an apartment.
Megan was able to keep her job as a pharmaceutical rep, but Glen’s construction work was on an indefinite hold, as he became Malia’s primary caregiver. “One of us needed to be with her at all times,” he said, echoing the struggle that many families fighting cancer immediately face. That’s where the Joe Andruzzi Foundation came in.
Glen shared a mutual friend with the Andruzzi family, who referred him to the Foundation and passed along a grant application. “At first I thought, we won’t need this,” Glen said. “But as our time at the Ronald McDonald house ran out, and we needed to rent a place, it came in handy.” Glen says the Foundation’s offer to pay the family’s first month of rent in Brookline “came at just the right time. We were able to dedicate our full attention to Malia’s condition and medical decisions. We didn’t need to waste time or energy worrying about our finances.”
The apartment enabled Glen and Megan to stay close to Malia, as she underwent treatment at Children’s. She finished her chemo on her third birthday – June 26, 2011 – and got to have a huge surprise party there. Her chemo and surgery was followed with radiation to her tumor bed. She also had her kidney removed prior to her stem cell transplant. After months of procedures and treatment, Malia was finally discharged from Children’s, but restricted to three months of isolation.
In July of 2012, the Jusczyk family travelled to Michigan and enrolled Malia in a ground-breaking study with Neuroblastoma expert Dr. Giselle Scholler. The trial aims to develop a medicine that may keep the disease from recurring or spreading.
For Glen, Megan and Malia, it’s been a long road… and it’s not over. Malia’s growth has been stunted, she needs speech therapy and counseling, she still has a tube in her chest and she’s lost hearing in both ears. But these challenges have not wavered the family’s strength and positive spirit.
Throughout her treatment, Malia just wanted to go swimming. Often, she’d ask her parents to take her to the beach, just so she could watch other children enjoy the water. That love of water was on her mind during each step of recovery.
Malia has been successfully in remission for one year, as of July 5. We’re happy to report that she loves spending time at waterparks, roller coasters, pools, and lakes – anywhere she can get her feet wet! Her determination to (Up)Beat cancer is a true exemplification of our mission, and the Joe Andruzzi Foundation is proud to call the Jusczyk's friends.