Elliot Brings Smiles to Golisano Children’s Hospital

Since beginning treatment for childhood cancer at Penn State Health Golisano Children’s Hospital, Elliot has earned a special nickname: “the mayor.” Every time he walks through the hospital, he smiles and waves to everyone he meets.

His family never expected to become so familiar with a hospital. But after Elliot was diagnosed with leukemia, Golisano Children’s Hospital quickly became a major part of their lives. Along the way, Elliot’s smile, personality and love for connecting with others have made him a familiar face to many of the people who care for him.

The Diagnosis They Never Wanted

Elliot has a genetic marker associated with leukemia, so his family regularly brought him to Golisano Children’s Hospital for testing. Just one month before his diagnosis, his test came back negative.

Then, Elliot began feeling sick. After several days of not feeling well, he developed a high fever. His dad, Mark, took him to a local hospital, where doctors ran bloodwork and sent Elliot and Mark to Golisano Children’s Hospital for further care.

Elliot’s hematologist-oncologist called his mom, Sara, and told her to come to the hospital, too.

“’His numbers are not looking very good,’” she remembers being told. “My gut instincts were telling me it’s leukemia. Our worst fears were coming true.”

Because Elliot was so sick, doctors first treated him for double pneumonia. Soon after, his family received the news they never wanted to hear: Elliot had leukemia.

His family was suddenly facing a new reality. They were given a binder filled with information about Elliot’s treatment and details about how Four Diamonds would support them throughout his cancer journey.

For the family, life quickly became centered around the hospital. Because Elliot has Down syndrome, his treatment looks a little different, and his medical team determined it was safest for him to receive much of his treatment in the hospital.

Support When His Family Needed It Most

Four Diamonds became an important source of support for Elliot and his family, helping ease some of the financial and practical challenges that came with his treatment for childhood cancer.

The gas vouchers provided by Four Diamonds were especially helpful. The family lives about 50 minutes from Golisano Children’s Hospital, and as Elliot’s treatment continued, Mark traveled back and forth between the hospital and home to care for Elliot’s sister, Wren, and take care of their house.

At the beginning of treatment, Wren was able to stay in Elliot’s hospital room with the family. As she got older and wanted more space to move around, it became more difficult for her to spend long periods at the hospital. The gas vouchers helped make the frequent trips home a little easier for Mark.

Four Diamonds also stepped in when the family experienced issues with insurance. When there was a delay in coverage for one of Elliot’s medications, Four Diamonds helped cover a significant cost so Elliot could receive the medicine he needed without waiting for the insurance process to be resolved.

“It was a huge relief since it was his chemo medications. I don’t know what we would have done. He needed it,” Sara said.

Finding Joy in the Hospital

Even during weeks spent in the hospital, Elliot and his family found ways to make their time there meaningful.

Elliot loved playing instruments with the Four Diamonds music therapist and watching window washers dressed as superheroes. He even had the chance to meet Penn State football players during one of his hospital stays.

When his family could not attend THON Weekend in person because Elliot was in the hospital, they participated through the livestream and activities provided by Child Life. They met their paired organization over Zoom, and members of the organization later visited Elliot and his family, bringing toys and specially made T-shirts.

His care team also became an important part of the family’s support system.

The nurses and doctors were there through the difficult moments and helped Elliot and his family stay positive throughout treatment. When Elliot’s inpatient treatment ended, Sara remembers wondering how she would adjust to not seeing the nurses and hospital staff every day.

“I saw these people more than my own family. They got me through some really hard times,” she said.

Music and Art Therapy Help Elliot through Treatment

Elliot’s care at Golisano Children’s Hospital went beyond his treatment for childhood cancer. Music and art therapy gave him opportunities to express himself, connect with others and engage in activities that helped make difficult moments a little easier.

For one of Elliot’s medications, his medical team needed to perform regular neurological checks. Sometimes, Elliot was not eager to participate. His Four Diamonds music therapist found a way to help him engage by using instruments such as a tambourine or maraca to encourage the motor skills needed to complete the checks.

Music can provide children with a creative outlet for self-expression while supporting physical and emotional well-being during cancer treatment and recovery. As was the case with Elliot, music therapy also can help reduce pain, anxiety and stress while improving mood, promoting relaxation and supporting communication, motor skills and relationships with care teams.

Elliot also worked with the Four Diamonds art therapist. One special project was a photo memory book filled with messages from Elliot’s nurses, doctors and specialty care providers.

For Sara, the book is something Elliot can treasure as he gets older.

She hopes that one day, he will look through the pages and see just how many people cared for him throughout his cancer journey.

Making the Hard Days a Little Brighter

Elliot is still receiving outpatient treatment for leukemia and frequently visits the clinic. Those appointments can include having his port accessed, receiving shots or getting chemotherapy.

But his family has found ways to make those difficult days a little brighter.

After appointments, they often stop to get something to eat. When they go through the drive-thru, they pull a little past the window so Elliot can roll down the backseat window and say hello to the workers.

The treatment itself may not be a happy occasion, but those small moments give Elliot and his family something to look forward to.

And wherever Elliot goes, he continues to bring smiles to the people around him.

For Sara, finding those moments of joy has helped make the challenges of treatment more manageable. She never expected to learn so much about caring for a child with complex medical needs, but she has taken on new responsibilities throughout Elliot’s treatment.

Elliot has a G-tube, a medical device placed in his abdomen to deliver nutrients, fluids and medications. Sometimes, Sara has to change it herself, which can feel overwhelming.

But when she manages something she once thought she could not do, she celebrates the accomplishment.

“This is awesome! We did it!” she said. “We had a small victory.”

Taking life one day at a time

Since Elliot began treatment for childhood cancer, life for the family has slowed down. They have learned to accept help from family and friends and to appreciate the support surrounding them.

Most of all, they are making the most of the time they have together.

Through the uncertainty of childhood cancer, Elliot continues to remind his family and everyone around him to find joy in the moments that matter, whether that means playing an instrument, waving to a familiar face at the hospital or saying hello to someone through a drive-thru window.

For Sara, Four Diamonds has been part of that support every step of the way. “We can’t thank Four Diamonds enough for everything. It’s been truly a blessing, and I don’t know where we would be,” she said.

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