Beyond a Rare Blood Cancer: Elijah’s Story

Because BPDCN is so rare and complex, not every pediatric center has the right tools to treat it. It takes a special blend of training, technology and teamwork. It demands providers who are plugged into the latest cancer research, and the broader community of cancer care.

Connecticut Children’s Center for Cancer & Blood Disorders is known for these qualities. To develop Elijah’s treatment plan, his care team — led by pediatric hematologist/oncologist Natasha N. Frederick, MD, MPH — reached out to international experts in his rare diagnosis, working together to map out the best path forward.

Ultimately, Elijah’s treatment plan included intense chemotherapy, monthly infusions, and over 20 lumbar punctures — both to check for cancer cells and to deliver medicine directly into his spinal fluid. He spent weeks at a time in the hospital, and missed his entire sixth-grade year of school. After one round of chemotherapy, it took him a week to regain the strength to walk; just lifting his foot off the bed felt impossible.

But the plan was doing its job. And throughout, Elijah held onto his optimism and sweet sense of humor. His Connecticut Children’s team played a huge role. The staff is dedicated to the unique needs of children and young people, which means they have a knack for making difficult times easier.

“They're all so good with kids,” says Aurora. “Everybody has a different job to do, from the nurses to the social workers to the doctors to the receptionist — and they all do it so well. We truly appreciate every single person.”

When Elijah, feeling mischievous, made a bet with his dad about how long his sedation would take to kick in, his Sedation Services team played right along — turning what might’ve been a scary situation into a fun one. A favorite nurse teased him about sneaking into the teen room to play video games, giving him a refreshing sense of rebellion. Another favorite nurse became like an aunt.

In other words, his team was sensitive not only to the physical challenges Elijah faced on his cancer journey, but also to the unique emotional and social challenges for a boy his age — and for his parents.

“They treated Elijah like their own,” says Aurora, Elijah’s mom. “They didn’t just see a chart number — they saw my baby. That hospital became a place of healing, not just for Elijah, but for our entire family.”
 

From Superhero Day to visits from local sports heroes, kids staying at Connecticut Children’s are often treated to special visitors. One of the brightest spots in Elijah’s journey came from an unexpected friendship with Andrea Hurley, wife of UConn men’s basketball coach Dan Hurley. Andrea was volunteering at Connecticut Children’s when she introduced herself to Elijah, and asked if he wanted to play Uno. It sparked a friendship that carried Elijah all the way to the NCAA Final Four, sitting courtside with the team after they won a national championship.

“It gave me something to look forward to,” Elijah says.

Of course, the most important piece of Elijah’s positive mindset was Elijah himself. Even when he was at his weakest physically, he kept pushing himself to do his physical therapy. No matter what kind of day he was having, he instinctively focused on making the people around him smile. Even when he could barely stand, he kept giving hugs.

As one of his nurses put it: Elijah gives more love than he receives.

“I’ve always been a loving person. I think the world needs more of that,” Elijah says. “And hugs. Hugs are very important.”
 

Today, Elijah is in remission. His strength is back. His smile is brighter than ever. And his family is finding new purpose in everything they’ve been through.

When Elijah was first diagnosed with BPDCN, his parents started a Facebook page — Elijah’s Entourage — to keep their family and friends updated on his cancer journey. Elijah’s Entourage is now a nonprofit organization with a broader mission: supporting other families navigating pediatric cancer. Through their online community, the family shares trusted resources, encouragement and connection. Throughout the year, they attend fundraisers around the state. Aurora is a trusted confidant for parents, both local and long-distance, who need someone who understands.

During Elijah’s chemotherapy at Connecticut Children’s, Aurora remembers looking out the window of his 8th floor room, watching cars pass by below — thinking of all the times they’d driven past the hospital without realizing what families inside were going through. Now they know. And they want other kids and parents, looking out similar windows, to know they’re not alone.

“We’ve been blessed in so many ways. Now it’s our turn to give back,” says Aurora. “Elijah’s journey isn’t just about surviving cancer — it’s about changing lives.”
 

This is a letter written and shared by Carl, Aurora and Elijah

There are moments in life that shift everything — the way you love, the way you breathe, the way you see the world. For me, one of those moments came when my son Elijah was diagnosed with BPDCN, a rare and aggressive form of leukemia, at just 10 years old.

I had never even heard of BPDCN before. Most people haven’t. It’s a type of blood cancer so rare that it took several tests and specialists to even find a name for it. And once they did, I was told that it was life-threatening and fast-moving. As a mother, hearing those words felt like being frozen in time.

But Elijah? He didn’t freeze.
He kept smiling.
He kept laughing.
He kept hugging.

From the very beginning, Elijah’s strength and spirit were undeniable. Even during the toughest days — when he was too weak to walk or when his little body was swollen from medications — he would find ways to bring comfort to others. One nurse told me, “Elijah gives more love than he receives,” and that’s when I realized: my son wasn’t just fighting for himself—he was teaching us how to love deeper, live louder, and never give up hope.

At Connecticut Children’s, Elijah received more than just treatment — he received a second family. The doctors, nurses, and staff treated us with compassion, dignity, and grace. They didn’t just see a chart number or diagnosis — they saw my baby. They celebrated his good days with high fives and comforted him on the hard ones with quiet strength. That hospital became a place of healing, not just for Elijah, but for our entire family.

Through the darkest days, I held onto faith. And I promised Elijah that we would turn our pain into purpose.

That’s how Elijah’s Entourage was born. It started as a small idea — just a way to keep family and friends updated. But it quickly became a movement. A community. A mission to spread healing, faith, and love. Our slogan is simple, but powerful:

“Changing the world one hug at a time. Simon says… give me a hug.”

Elijah’s Entourage now offers support for other families going through the unimaginable. We created a list of resources, and support most events throughout CT, fundraisers, and hospital visits — often with Elijah leading the way. He reminds us that even when life feels unfair, love can still win. That even after chemo, spinal taps, and hair loss, a child’s joy can light up a room.

Today, Elijah is in remission. Every day is still a miracle, and we don’t take a single breath for granted. He’s growing stronger, sillier, and more loving every day. And I know his journey isn’t just about surviving cancer — it’s about changing lives.

When people ask me what they can do, I tell them:
Be kind. Be present. And never underestimate the power of a hug.

Because Elijah has taught us all that healing isn’t just in medicine — it’s through the small expressions of love that we show towards one another.