Meet Eli

Hometown: Aurora, CO
Birthday: June 5, 2015
Age at Diagnosis: 22 months
Diagnosis: Pilocytic Astrocytoma

Eli wants to be a Boy Scout, go to the beach, and be a mailman when he grows up. He loves Scooby Doo, Legos, puzzles, and all Super Heroes!

It was late March of 2017 when Eli’s parents noticed he was having problems with his left arm. Two-year-old Eli was lively and active, always playing with his siblings. His parents assumed he had a minor injury from roughhousing, but they followed up with a routine doctor’s visit for good measure. Eli’s pediatrician agreed—just the regular bumps and bruises!—so they went home and went on with their lives, until a couple of weeks later when Eli started having trouble turning his neck from left to right. It was time for a closer look.

An MRI scan revealed a mass on his brain and spine, and further genetic sequencing revealed that Eli had a pilocytic astrocytoma with a FGFR1-TACC1 fusion. It’s not the worst kind of brain cancer. But is any kind of brain cancer good? Just shy of Eli’s second birthday, he underwent surgery to remove as much of the cancer as possible, and Eli’s parents rejoiced in the news that his odds looked good.

There was a 90 percent chance this tumor would not come back. Everyone started to breathe easier. Six weeks later, a new MRI showed that what remained of Eli’s tumor had grown by 50 percent. Eli began radiation and endured 20 treatments over six weeks. Unfortunately, this led to the side effect of hydrocephalus, a kind of fluid buildup around the brain, which required doctors to, as they say, “pop a hole” in the right side of his skull to drain the fluid
away from his brain. Because of the development and use of genetically targeted treatments, Eli’s team was able to follow this procedure with a pill that would help keep his cancer at bay.

Today, Eli goes to preschool, plays soccer, and even learned how to downhill ski. On the outside, he looks like a normal kid, but his family knows the reality of the impact of this disease. His parents hold their breath for the results of every scan. And they are grateful for the research that is improving outcomes for kids and families on their own cancer journeys.

“Any random Tuesday you could get the bad news. The worry never really goes,” his dad says.

Meet Ivy Lee

Hometown: Denver, CO
Birthday: October 19, 2015
Age at Diagnosis: 12 months
Diagnosis: Neuroblastoma

Ivy loves all things Frozen.


In October 2017, one-year-old Ivy started telling her mom that her back hurt. When it didn’t go away, Ivy’s mom scheduled an appointment with their pediatrician, where suspicious blood work led to a quick referral to the hospital. That’s when they found cancer in Ivy’s abdomen—a Stage 4 high-risk neuroblastoma that had started on her adrenal glands and had spread to her bone marrow. Treatment started right away.

Ivy went through six rounds of chemotherapy, a tumor resection, the harvesting of stem cells, two stem cell transplants, and 20 rounds of radiation and immunotherapy—all within a year. Of course, there were also complications like a blood infection and the long, challenging days spent in the hospital. Along with traditional treatment, Ivy is receiving immunotherapy meant to help her immune system “see” and target her cancer.

And with the help of her doctors, Ivy was accepted into a cancer vaccine clinical trial at Memorial Sloan Kettering.

Throughout, “She has been so amazing,” said her mom, Amber. “That’s where I get my strength—from Ivy. We see her getting beat down and she pops right back up—running around like she’s not even sick. We’ve certainly had sick days and hard days, but it’s so amazing to see her resiliency. I can’t believe how tough this kid is.”

Today, Ivy’s scans are cancer-free. With the help of doctors who are at the leading-edge of researching new therapies and strategies to fight Ivy’s disease, her parents hold onto the hope that Ivy will stay cancer-free.