Mighty Blog

Cullen’s resilience: first leukemia, now a tumor

Eleven-year-old Cullen isn’t going to let anything stop him. Amy and Matt describe their youngest son as feisty, funny and stubborn at times. That fighting spirit has served him well through not one, but two complex medical diagnoses in his young life.

When Cullen was 3 years old he was diagnosed with acute myeloid leukemia (AML). He spent months at Children’s Minnesota going through four rounds of chemotherapy.

“He sailed through chemotherapy. The nurses got to know him well as he went around the hospital floor with a tricycle,” said Amy.

Cullen went into remission and for seven years was able to get back to being a kid who was into playing baseball, Xbox and going on spring break with his family. On the outside, he appeared to be doing great. But, that changed in the summer of 2020.

New diagnosis, same great care

That summer, Cullen started getting bad headaches. Amy and Matt brought him back to the Cancer and Blood Disorders program at Children’s Minnesota where a bone marrow biopsy found abnormal cells. He was diagnosed with Ewing’s Sarcoma, a rare tumor that most often occurs in and around the bones. Cullen’s primary tumor was in his pelvis, hidden so no one could see it. The only clue that something was wrong were the headaches.

Cullen was back at the hospital undergoing chemotherapy. The majority of nurses on the floor had seen him go through treatment when he was 3. They tell him stories from that time. Amy and Matt are grateful for Cullen’s entire care team.

“It’s been tough. But, we’ve been through if before. We know the lingo. We’re here so much it’s almost like family. The nurses and physicians are great and keep us updated,” said Matt.

Treatment during the COVID-19 pandemic has been different, but the family says the team at Children’s Minnesota has made it easy. A snack cart makes the rounds on the floor. Child Life will bring arts and crafts to Cullen’s room since they can’t be out in the hallways for safety reasons.

“When he was 3 he didn’t know what was going on. Now that he’s older, he’s asking lots of questions. Child Life and social work were helpful in guiding those conversation,” said Amy.

Strength in numbers

Battling a complex medical diagnosis takes a team. And luckily, Cullen has a strong one. In addition to his care team at Children’s Minnesota, Cullen has a big support system cheering him on from home. Cullen’s four brothers and sisters, Lily (twin sister), Mateo, Ella and Mason, do their best to support him from home, and his extended family has helped Matt, Amy and Ella keep things running at home.

The family encourages others going through a similar health care journey to use their resources, like family and neighbors, to stay strong. “It’s not an easy path. Don’t get discouraged by the bumps, there’s going to be plenty. Just keep going,” said Matt.

Wild About Children giving campaign and online auction

The Minnesota Wild Foundation is hosting its annual fundraiser, Wild About Children, but this year looks a little different due to COVID-19. Since they will not be able to get together as they usually do, they are taking our efforts online with the Wild About Children giving campaign and online auction. Proceeds from the event will benefit the Wild Foundation and its premier community partner, Children’s Minnesota, with funding focus on their pediatric hematology and oncology program.

Cullen’s feature

Part of their campaign this year, some Children’s Minnesota patients are being interviewed by the Minnesota Wild’s broadcaster, Ryan Carter. Watch the feature here:

Children’s Minnesota Cancer and Blood Disorders program

Children’s Minnesota is the largest pediatric cancer and blood disorders program in the Upper Midwest, caring for more than 65 percent of children diagnosed with cancer or blood disorders in Minnesota. In addition to offering advanced, individualized care for newly diagnosed children, teens and young adults with cancers and blood disorders, we also provide innovative treatment for rare, relapsed and recurrent cancers.

Nick Petersen