Spunky Sylvia doesn’t back down from cancer

COVID-19 had just hit one month earlier, turning the world and just about everybody’s lives upside down. Yes, there was joy, as the Gerlachs had just celebrated the birth of their third child, Jonathan. Much of their concern, however, was focused on their middle child, Sylvia, who was not acting like herself.

Almost 3 at the time, Sylvia looked quite pale, especially sitting next to her new baby brother. Little red dots appeared around her eyes and face. Before they knew it, Nathan and Katie found themselves at American Family Children’s Hospital in Madison about to hear some difficult news.

“An entourage of doctors came into our room, and you just knew this was going to be a long conversation,” Nathan said. “I’m holding back tears right now just thinking back to that day.”

That day was when Little Sylvia was diagnosed with B-cell acute lymphoblastic leukemia. Before they knew it, the Gerlachs found themselves apart from each other so Nathan could stay at the hospital with Sylvia during her treatment while Katie stayed home with baby Jonathan and their oldest child, Alyce. Both parents teach music at Cambridge (Wisconsin) High School, but Katie took the Fall 2020 semester off while Nathan returned to virtual teaching. They switched places the next semester.

Down Syndrome increased her risk for leukemia

Sylvia also has Down Syndrome, which made her more prone to being diagnosed with leukemia. Fortunately, UW Health’s pediatric hematology/oncology team was able to start treating Sylvia on an international clinical trial that includes an arm specifically for patients with both leukemia and Down Syndrome.

“The goal of the study is to reduce some of the unpleasant side effects of cancer treatment by replacing some of the traditional chemotherapy with an immunotherapy drug called blinatumomab, which helps the body use its own immune system to fight cancer,” said Dr. Cathy Lee-Miller, Sylvia’s UW Health Kids oncologist.

“It’s an intense course of treatment that starts with nearly three months in the hospital, but there is great promise that this drug is more effective and less toxic than giving traditional chemotherapy,” she said. “We are excited for Sylvia and her family that she was able to participate in this Children’s Oncology Group clinical trial.”

Life for the Gerlachs over the past 2½ years has been filled with plenty of stress as Sylvia battled through her share of tough days. Fortunately, joyful moments have also been plentiful.

“Sylvie hated being cooped up in her hospital room, so she thought nothing of busting out into the hallway in her diaper and gown,” Katie said. “The nurses called it her jailbreak move.”

Sylvia also entertained hospital staff by cruising down the hallway while some of her favorite songs were playing.

“Nathan created a ‘Sylvie hallway’ playlist that includes music from Lizzo, Journey and the movie ‘Frozen,’” Katie said. “She kind of had the run of the hallway, giving high-fives to everyone.”

No doubt she would battle through

"Spunky" is one word that comes to mind when thinking of Sylvia, said Kelly Monroe, RN. “She is just so feisty, and we had no doubt that she was going to battle through this.”

A UW Health Kids Cancer nurse for nearly 20 years, Monroe will be hard-pressed to forget this amazing little girl.

“You kind of have to build a little wall around your heart when you care for so many kids with cancer,” Kelly said. “Sylvie kind of snuck up over that wall with me. She’ll always have a special place in my heart.”

In August 2022, the hearts of many were filled with joy when Sylvia’s care team, family and friends celebrated the end of her cancer treatment at a special ceremony in which Sylvia approached the “chemo bell” at American Family Children’s Hospital and gave it a big loud clank.

“We were so grateful and humbled to be there for Sylvia’s bell-ringing,” Nathan said. “It was emotional on several levels, one of which is that some children never make it to a bell-ringing day. We know how blessed our family is. There were plenty of hugs and tears to go around that day.”

Sylvia, who resumed her early childhood program and 4K school in September, will be monitored closely by the UW Health Kids Cancer team for years to come.

“I’m happy I get to keep seeing Sylvia and her family, but my dream is for all of this to one day be a distant memory for the Gerlachs,” said Dr. Lee-Miller.

Looking back over everything their daughter has been through, Nathan and Katie appreciate more than ever the value of having state-of-the-art pediatric cancer care so close to home.

“It’s not just the incredible support they provide for the whole family,” said Nathan. “We are also so lucky to have such world-class care in our backyard. You just don’t realize what it means until something like this happens to your family. We have some of the leading medical experts right here in Madison, Wisconsin. We should recognize it and cherish it because they are saving lives. They certainly saved my daughter’s life.”