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Holiday Hope Amidst Heartache

Collaboration for Better Cancer Care

It was November, and the holidays were approaching. Thoughts of turkey and stuffing were replaced by concern when a visit to the emergency department quickly led to a number of tests for Trevor Pavey.

In the weeks leading up to that hospital visit, Trevor, who was only 10 years old at the time, was having difficulty straightening his neck. He was also vomiting at the same time every day. “There were no other symptoms or fever,” says his mother Michelle. “We had an appointment scheduled that week to look into allergies or stress.” However, that particular day, he had been vomiting until he became lethargic.

While Trevor was in the emergency department, he was given medication and fluids to alleviate his nausea. A rounding physician suggested a lumbar puncture, a procedure where fluid is taken from the spine, to investigate his unusual symptoms further. While they were waiting for the test to be processed, Trevor appeared to be very uncomfortable and began speaking strangely.

“They found blood in his lumbar puncture and ordered a CT scan,” says Michelle. The scan revealed a tumor in Trevor’s brain, which warranted immediate surgery. Four days later, the biopsy confirmed their suspicion. Trevor was diagnosed with a brain tumor known as medulloblastoma, which is located at the back of the brain near the spinal cord and accounts for 20 percent of brain tumors in children.

The spinal cord is the command center for communication between your brain and the remainder of your body. Because of the tumor’s location, Trevor experienced difficulty walking and required inpatient physical therapy. He was admitted to Northwestern Medicine Marianjoy Rehabilitation Hospital.

“There were only two locations that could handle pediatric, post-surgical brain trauma. Marianjoy Rehabilitation Hospital happened to have a bed open. It was a blessing,” says Michelle.

There, the director of pediatric rehabilitation Mary E. Keen, MD, suggested a consultation with Larissa Pavone, MD, who is an attending pediatric physical medicine and rehabilitation physician with a special interest in cancer rehabilitation and director of the Day Rehabilitation Program at Marianjoy. Dr. Pavone sat down with the family to look at their options and discuss a plan of action.

“We didn’t know there were options. They were amazing,” recalls Michelle. “Dr. Pavone made mountains move. The next day, we left with appointments in hand.”

Better Collaboration Leads to Better Care

Several years ago, Marianjoy began to receive therapy orders for children who were receiving proton therapy treatment at Northwestern Medicine Proton Center. These children are treated in a multidisciplinary clinic at Northwestern Medicine Proton Center by a care team made up of several healthcare providers, including Dr. Pavone.

“The patients and their families are so busy with treatments and appointments at Northwestern Medicine Proton Center and Northwestern Medicine Central DuPage Hospital, it can be difficult to have a separate visit at Marianjoy,” explains Dr. Pavone. Bringing Marianjoy care to Chicago Proton Center simplifies the care journey for families. “Our goal was to ease the family’s burden and improve the comprehensiveness of the care that was being provided. We are able to treat patients as outpatients and inpatients during this process.”

Dozens of pediatric patients have benefitted from the coordinated effort, including Trevor.

“We Were Very Much Blessed”

Trevor followed a rigorous schedule involving trips to the Northwestern Medicine Central DuPage Hospital pediatric outpatient infusion center along with appointments for occupational and physical therapy. “He had a crazy schedule. He’d be receiving infusions, then occupational therapy or physical therapy. Sometimes it was both,” says Michelle. “He received the gold standard of care. It was clear they wanted the best for our kiddo.”

Looking back, Trevor and Michelle remember that time fondly, despite undergoing treatment in the midst of the holiday season. Trevor got to celebrate Thanksgiving at home with his family using a walker. When he completed treatment the following September, Michelle admits it was difficult to say goodbye to Marianjoy, where they had grown to depend on so many care providers.

Trevor’s busy schedule looks more typical these days, including participation in gym class. Though he admittedly does not enjoy running, he says, “I like the games we get to play.” Now in seventh grade, Trevor looks forward to breaks from school when he can travel with his family. He also remains active in his youth group.

Prayer and spiritual music helped Trevor and Michelle get through Trevor’s cancer journey. But they also stress the wonderful care they received through Northwestern Medicine. “It was amazing how well he was cared for. I can’t say that enough,” Michelle says. “We were very much blessed.”

Northwestern Medicine Proton Center