Diagnosed with acute lymphoblastic leukemia as a baby, Stephanie overcame the odds

Stephanie Schuldes was not expected to live as a baby.

That she survived at all was truly incredible. That she is about to turn 29 years old is nothing short of a miracle.

It was early 1991. Baby Stephanie was so pale as an infant that her grandmother instinctively knew something was wrong.

“We’re white people,” said Stephanie’s mother, Susan, trying to convince herself that her baby’s white-as-snow appearance wasn’t that abnormal.

“We’re not this white,” said Susan’s mother, Bonnie Spiegelberg.

As they were visiting Susan’s sister in Wausau, Wis., the family took their 7-week old infant to a local pediatrician.

“I don’t know what’s wrong with this baby, but she is very ill and needs to get to a specialist right away,” said the doctor.

While the pediatrician started a series of tests on Stephanie, Susan instantly realized how sick her baby was.

“She’s got leukemia,” she told her mother.

Soon, Susan’s instinct would be proven correct. Stephanie was flown by helicopter to Madison, where the on-call UW Health pediatric hematologist/oncologist – Dr. Paul Gaynon – managed the situation at University of Wisconsin Children’s Hospital, the forerunner of today’s American Family Children’s Hospital.

“I was told there was a baby in the pediatric intensive care unit (PICU) with pneumonia and a high white blood count,” recalls Dr. Gaynon, who currently practices at Children’s Hospital Los Angeles.

It was leukemia – and it wasn’t good

“I first attributed Stephanie’s high white blood count to pneumonia, but when I learned that the count was more than 500,000 – normal is 5,000 to 10,000 – I knew she had acute lymphoblastic leukemia (ALL) and the outlook was not at all good.”

Stephanie’s blood was drawn into a syringe and Susan could barely believe her eyes.

“Her blood looked like lemonade,” Susan says. “It was virtually all leukemia cells. There were almost no visible red blood cells.”

As Dr. Gaynon told the family, most childhood cases of acute lymphoblastic leukemia are diagnosed at preschool age or older. Infant ALL is very rare, occurring in perhaps 100 babies per year in the US. Even today, only about one-third of infants who are diagnosed at less than 3 months of age survive.

Dr. Christian Capitini, a UW Health pediatric hematologist/oncologist, says most infants have a gene rearrangement called KMT2A that helps make the cancer very aggressive. “By the time a child is age 1 or older,” he says, “the KMT2A gene is present perhaps only 5 percent of the time.”

“This means,” adds Dr. Gaynon, “that older kids with ALL can be more easily treated and better tolerate the treatment – difficult as it may be,” he says. “Infants, however, are at great risk for serious neurocognitive side effects and present great challenges with regard to nutrition, infection and diaper care.”

Susan Schuldes could barely take in all this information she was hearing. All she knew was that her baby was critically ill, and – this was life before cell phones – she could not reach her husband, who was on a fishing trip in northern Wisconsin.

“A neighbor went out on a boat and found him,” Susan says. “When he finally got to a phone, my sister told him about Stephanie, and he drove to Madison immediately.”

As Dr. Gaynon and the Schuldes family weighed the magnitude of the situation, it was impossible to look more than even a few hours ahead.

Stephanie begins experimental chemotherapy protocol

They agreed to a then-experimental chemotherapy regimen that included Methotrexate, a drug that interferes with the reproduction of cancer cells. Because she was so young, Stephanie was not given radiation therapy because of the high risk for brain damage.

She was initially hospitalized for 30 days and repeatedly returned to Madison for chemotherapy over the next 2½ years. During several of these hospitalizations, Stephanie would sleep almost 24 hours a day for 7 to 10 days.

Stephanie Schuldes, as a baby, seated on an exam table between her mother and a doctor

“At the time we gave Stephanie her maintenance chemotherapy, it was done by injection, which we called 'getting a poke' to kids,” says recently retired UW Health pediatric hematology/oncology nurse practitioner Sharon Frierdich, “Stephanie would sit on her mom’s lap and listen to a cheerful song from my Mickey Mouse watch, which would distract her.”

Against long odds, Stephanie’s chemotherapy did its job and she reached remission. By age 12, she was pronounced cancer-free. Stephanie had a few physical delays as a toddler, but otherwise experienced no ill-effects from her disease or treatment.

The miracle of 29

The incredible miracle about this little girl, however, lies in a simple number: 29.

The little baby few thought would survive in 1991 will – incredibly – turn 29 years old on her next birthday in March 2020.

Stephanie grew up with her family in Appleton, Wis., graduated high school with a 4.0 grade point average and graduated Phi Beta Kappa from the University of Wisconsin-Madison. She also earned a master’s degree from the University of Minnesota-Twin Cities and works in Wisconsin as a licensed speech-language pathologist in pediatrics. During her free time, Stephanie swims, runs and spends plenty of time enjoying the outdoors.

Stephanie Schuldes, as an adult, smiling while leaning on a table

“My treatment was finished before I turned 3, so I’m lucky that I don’t remember the bad parts,” says Stephanie. “Over the years, I came in for check-ups in the pediatric cancer Caring for Life Clinic until age 25. I looked forward to seeing my nurse, Sharon, every visit.”

Stephanie knows how lucky she is, especially because so few babies diagnosed with leukemia go on to live such a normal, healthy life.

“There really is nothing that stops me from doing what I want to do,” she says. “To come away from what I went through being cured and without severe side effects is almost inconceivable.”

A walking miracle

If you met Stephanie Schuldes, you would never know that she is a genuine walking miracle. Her father, Michael, calls Stephanie his personal hero.

“She taught me that some things in life are really important, while others may seem that way but, when given time to reflect, are not,” he says. “She also says that life is precious and to make the most of each day.”

Michael and Susan, who now live in Waukesha, Wis., know what it means to give back, having spent a decade on the board of the Wisconsin Chapter of the Leukemia & Lymphoma Society. They also ran a golf outing benefiting that organization for 15 years.

Reflecting on those anxious days and nights with their little girl during cancer treatment, the Schuldes family will never forget what UW Health did not only for Stephanie, but for her parents as well.

“UW saved our daughter’s life and took great care of Michael and me as parents,” Susan says. “Stephanie has a couple of physical scars, but because she was so young, her father and I have all the emotional scars. Nobody would choose to go through this, but the childhood cancer team in Madison was wonderful and we are forever grateful."