Update December 2019: It’s with heavy hearts that we share that, after over a year of fighting cancer, Madison Fedak has passed away. A one-of-a-kind girl, she left a mark on all of us at Levine Children’s Hospital. To us, she was more than a cancer patient – she was a chef, an artist, a philanthropist. And she’ll never be forgotten. We’re sending all our love to the Fedak family. If you’d like, you’re invited to make a donation in Madison’s memory to the Isabella Santos Foundation.
February 25, 2019 was a big day for 6-year-old Madison Fedak. After a year of fighting bone cancer, the sweet survivor rang the end-of-treatment bell at Levine Children’s Hospital.
It all started in spring of 2018. Madison’s parents noticed something was off with their active daughter when she wasn’t walking or running like she usually did. At first, they thought the limping and clumsiness were due to growing pains or lack of sleep, but in a matter of days, Madison woke up with so much leg pain she couldn’t get out of bed.
They knew they needed answers, so they hurried to a local emergency room, where an X-ray revealed their worst nightmare: a tumor in Madison’s femur. “I’m pretty sure my world stopped turning,” recalls Laura, Madison’s mom. “All I wanted to do was grab Madison, unhook her from her IVs, and run back home to where it was safe – back to where things were ‘normal.’”
Instead, the Fedaks were rushed to the oncology floor at Levine Children’s Hospital, where they entered a new normal as they received a lifechanging diagnosis. Madison had osteosarcoma, a bone cancer so rare it’s almost unheard of in kids her age.
Javier Oesterheld, MD, Madison’s cancer specialist at Levine Children’s, walked the family through their little girl’s treatment plan, which included chemotherapy, medications and surgery.
Nothing about the road ahead was easy, but along the way, Madison and her family found one thing you can’t prescribe: hope.
More than a statistic
Over the course of the next year, driving two hours for treatment and long hospital stays became routine for the Fedaks. They quickly learned that a cancer diagnosis affects more than the patient – it affects the whole family.
“Our program really focuses on how to take care of the patients and the whole family at the same time,” says Dr. Oesterheld. “From physical to mental health, we really focus on whole body wellness.”
Levine Children’s Hospital started to feel like home and Madison’s care team like family. The effects of chemotherapy can be excruciating, and Madison experienced them all, from the vomiting to the hair loss to the mouth sores and fatigue.
Through the highs and lows of her condition, every member of her hospital care team was there to raise her spirits, playing games to help her feel better and having her favorite meal (nachos) ready in the cafeteria.
After repeated treatments and rounds of chemotherapy to shrink the tumor, Madison was ready for surgery to remove it. Although much of her femur was replaced with a cadaver, her surgeons were able to save her growth plates. This means the 6-year-old can keep growing healthy and strong for many years.
“We were beyond pleased at how well she progressed,” says Laura. “She was amazing and met every challenge given to her by her physical therapy team, doctors and child life specialists.”
Madison endured several more months of treatments and scans, and at last, she entered the next phase of her cancer journey: survivorship.
“To the entire Levine Children’s Hospital team, you’ll never know how you’ve impacted our lives,” says Laura. “We never thought in a million years that we’d be another statistic of childhood cancer. But because of you, we’re also a statistic of survivorship.”
The start of something beautiful
Madison’s journey to survivorship was long and difficult. Before she was even in the first grade, she’d experienced more struggles than most do in a lifetime, including learning to walk again after her surgery.
But wait – this is Madison we’re talking about.
All the treatments to save her life might have weakened her body, but they didn’t weaken who she is. Because chemotherapy made her more susceptible to illnesses, Madison spent the extended periods of time between hospital stays at home. Instead of pitying herself, she found new joys in things like cooking, baking and crafts.
Things really changed when a Levine Children’s child life specialist taught her how to make jewelry. The hobby started as a way to distract and comfort herself through treatments, but in true Madison fashion, she transformed it into a way to help others.
She gives her jewelry – called Hope Ropes – to other kids in the hospital and even sells them to raise money for pediatric cancer research. Her goal, she says, is to bring hope to people on the day they need it most.
As you’ve guessed by now, Madison isn’t going to let her past with pediatric cancer define her. Instead of getting down, she gives back. In fact, Madison even brought her love of cooking to Seacrest Studios at Levine Children’s Hospital, putting on her chef hat to make things like pizza and acai bowls for other patients and staff.
“She’s blossomed as a kid. She was really shy, but now she’s a rock star!” says Dr. Oesterheld. “My hope for Madison is that her leg continues to become strong. And that she never has cancer again.”
