Months after their child died from a rare brain tumor, the Kramers decided to keep her memory alive by helping other pediatric cancer patients and their families during their battles.

By Samantha Lande
September 25, 2019
Family photo of Scott, Pammy, Lily, and Maddie. Courtesy of the Kramer family.

Thinking it was just a bad cold, Scott and Pammy Kramer took their daughter to the emergency room one night to diagnose her neck pain and hand rashes. But as the night went on, Maddie's feet crumbled from underneath her and paralysis set in on her left side.

Maddie, then 2-and-a-half years old, had an MRI that revealed she had a tumor on four levels of her spinal cord. Doctors recommended she undergo major surgery while still under anesthesia from the MRI. The best-case scenario, they said, was months of physical rehab with a glimmer of hope that Maddie may walk again. "That was our nightmare," says Scott. "All we wanted was to hear her voice again."

The toddler not only survived the surgery, but within two weeks was back to running, jumping, singing, and dancing. "A true seminal miracle," adds Scott. But that was only the beginning of the battle.

Soon after surgery, Maddie was diagnosed with atypical teratoid rhabdoid tumor (AT/RT), a fast-growing tumor of the brain and spinal cord. "AT/RT is usually found at the base of the brain in areas that control balance, heart rate, and breathing," says Amy Sobota, M.D., a pediatric hematologist oncologist at Boston Medical Center. "It is extremely rare and tends to affect very young children. Unfortunately, the prognosis is overall poor."

But the Kramers didn't ask about the survival rate or Google facts about the disease. They instead trusted the treatment protocol and focused their efforts on doing whatever they could for their daughter. That included making her hospital room at Lurie Children's Hospital of Chicago more comforting and homey. Pammy decked out the walls with disco balls, streamers, a makeshift bookshelf, and figurines. She also made sure to have music playing since Maddie always loved to dance. "We didn't call the hospital a hospital—we called it Lurie's Place," says Pammy, "Maddie thought of it as another play space."

Maddie with her little sister, Lily.

The Kramers luckily had the support of family and friends, who helped take care of their second daughter, Lily, born just two months before Maddie was diagnosed. And because it was difficult to constantly update family and friends on Maddie's progress, Scott started a blog to inform everyone at once. What was meant to be a mere status report turned into lessons from a toddler wise beyond her years. Just scrolling through his blog of close to 80 entries—later turned into a book titled Maddie's Miracles—it's clear this little girl reminded everyone to focus on being in the moment, going with the flow, and most importantly, to keep on dancing. "Kids are amazing; their innocence and ability to stay present make them a force of nature in the face of medical problems," says Scott.

When Maddie passed away on January 4, 2018, her parents launched Dancing While Cancering, The Maddie Kramer Foundation the following September to honor her legacy. The organization helps kids continue to feel like kids despite going through cancer. "We made a commitment that day to do everything in our power to make sure Maddie was remembered as an inspiration," says Scott.

Now in 11 hospital across the country and counting, Dancing While Cancering provides newly diagnosed pediatric patients with a bright neon green "Smile Pack" filled with items like a wireless speaker, streamers, musical instruments, and decals that can help transform a hospital room into a place of joy. "When parents are at the lowest of lows, we can provide a ray of hope," says Scott.

The Kramers delivering the Smile Packs. Courtesy of the Kramer family.

Sara Stewart, M.S., CCLS, a child life specialist at Lurie Children's Hospital in Chicago, who worked closely with the Kramer family, has seen a big difference in the short time they've been able to give these packs to families. "What Scott and Pammy have done has helped to further create a joyful culture in what's generally not a happy time," says Stewart, who works on the hematology/oncology floor and provides emotional and psychological support to families. "It gives families hope for moments of joy and allows them to find positive in something so dark."

The foundation also provided Lurie Children's Hospital with Maddie's closet filled with bins of figurines, including Doc McStuffins, Peppa Pig, and Paw Patrol, for kids to use in the playroom. "Maddie loved to dance literally, but she also figuratively danced her way through her journey via her imagination," says Pammy. "She just brought the fun, and this is the best way we can honor her."

In honor of pediatric cancer awareness month in September, the foundation started #Battlewithjoy, an Instagram campaign featuring pediatric cancer patients bringing joy during their time in the hospital. Follow along @dancingwhilecancering and learn more at www.dancingwhilecancering.org.

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