When Walter Merck attempts an obstacle course at his physical therapy appointment, “he just does what he wants,” laughs his mother, Amber. “It’s Walter’s world; we just live in it.” Like many 2-year-olds, Walter can be stubborn — but in his case, it may be a stubbornness born of necessity. Since infancy, he’s been overcoming far more challenging hurdles.
Walter’s journey began in late 2020, when what should have been a joyful first Christmas was marked by vomiting, diarrhea, and a lack of appetite. Although he had just learned how to sit up, he suddenly could no longer do so without support. “We went from visit to visit with his pediatrician and received no concrete answers,” remembers Amber. Finally, in mid-January, she and her husband, Ryan, brought Walter to Boston Children’s emergency department.
An unexpected diagnosis
At Boston Children’s, imaging tests revealed the unexpected: a grapefruit-sized tumor in Walter’s brain. He was immediately transferred to the intensive care unit (ICU) while clinicians assembled a care team for him. Led by neurosurgeon Dr. Lissa Baird, co-director of the Brain Tumor Center, the team determined that the size and type of tumor could put Walter at risk for increased blood loss during surgery.
To address that concern, Walter underwent embolization to block blood flow to the tumor prior to its removal — in all, an 18-hour event. “It felt like the longest day of our lives,” says Amber. The surgery was a success but ultimately confirmed Dr. Baird’s suspicions: Walter’s tumor was a choroid plexus carcinoma, a rare and aggressive type of malignant brain tumor that mostly affects children under age 2.
Treatment — and support
Although his tumor had been removed, Walter still required treatment with chemotherapy, which began in February 2021. In all, he underwent five rounds of chemo, followed by a stem cell transplant that summer at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. He also needed further procedures to relieve hydrocephalus, a buildup of cerebrospinal fluid around the brain that can recur in children with choroid plexus carcinoma.
The good news: Walter bounced back quickly and made a great recovery, zooming around the floor during his inpatient stays and becoming a bit of a mascot on the hospital’s ninth floor.
Through it all, Amber and Ryan juggled work and caring for their three older children, Peyton, Wyatt, and Charlotte. The couple leaned on family and friends for support — and found solace and community through social media, sharing updates with loved ones through a Facebook page called Walter the Warrior Baby.
Between speech, physical, occupational, and water-based therapy, as well as developmental work, Walter is a busy kid these days. He still finds time to just enjoy childhood, whether that means playing with his toy trains or sailing down his indoor slide. Despite all he’s been through, he maintains a goofy, playful attitude — and the stubborn streak that has helped carry him through life.
“He’s supposed to wear glasses and hearing aids,” explains Amber. “But he doesn’t like wearing his hearing aids right now.” After all, he is 2.
Learn more about the Brain Tumor Center.
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