Johsel’s Story: Strength in the Smallest Fighter

When Kimberly welcomed her son Johsel into the world at just 26 weeks, she knew from the very beginning that he would be a fighter. “He was so tiny,” she remembers. “But even then, I could tell he was strong.”

Johsel spent 87 long days in the NICU. At last, she brought him home, but almost immediately her instincts told her something wasn’t right.

“He was vomiting so much and hardly eating,” Kimberly recalls. “Then I noticed only one side of his face would move when he cried. As a mom, you just know. Something was wrong.”

Doctors initially reassured her that his symptoms were likely related to prematurity. But Kimberly, who had worked in healthcare for 15 years, refused to accept that answer. “I knew how to look for signs, and I wasn’t going to ignore what I saw. I kept pushing until they listened.”

Finally, an MRI revealed the unthinkable: at just three months old, Johsel had a large brain tumor pressing against his brainstem. The diagnosis was Choroid Plexus Papilloma, a rare tumor in a difficult location called the posterior fossa.

Kimberly remembers the moment vividly. “I was just crying in the ICU, thinking, how is this happening? I already went through so much just to bring him into the world, and now this.”

Johsel’s doctors explained the tumor was growing quickly. Waiting meant he might only have months to live. Kimberly and Johsel’s father, Kai, had to make a choice. “It was the hardest decision of our lives,” Kimberly says. “The surgery was high-risk because of his age and the tumor’s location, but we wanted him to have a chance. Even a chance was worth it.”

On August 11, Johsel underwent a 13-hour brain surgery. Kimberly’s heart raced with every phone call from the hospital. “Each time they called with an update, I wondered, is this the good call or the bad one?” she recalls.

At the end of the day, the neurosurgeon shared news that felt like a miracle: they had removed the tumor completely. “I can’t even explain the relief,” Kimberly says. “It was like the weight of the world lifted.”

Kai had been by Johsel’s side through the appointments and hospital stays. He shared the same sense of gratitude, overwhelmed by the sight of their baby coming out of surgery alive. For him, that moment restored hope.

Even the medical team was amazed by Johsel’s resilience. “He is so strong,” Kimberly says. “He surprised the doctors and nurses with how well he recovered. No matter what it is, he just gets through it.”

Since surgery, Johsel’s progress has been remarkable. “The moment they removed the tumor, his appetite came back,” Kimberly laughs. “Now, he just loves to eat.” He has begun rolling over, smiling, and laughing, milestones that once felt so uncertain. His big sister and brother, Kamryn and Xavier, adore him. “When they come home from school, they run straight to him. Seeing that joy on their faces makes my heart full,” Kimberly says.

There are still challenges ahead. Johsel has permanent hearing loss on his left side and may need ongoing monitoring to ensure the tumor does not return. Kimberly is realistic but hopeful. “A brain tumor is part of his story, but it does not define him. He’s just a regular baby with his own little personality. He’s strong, he’s happy, and he’s ours.”

Through it all, Kimberly and Kai are grateful for the support they’ve received—from doctors, nurses, and social workers to each other. We’ve had our ups and downs, but Johsel’s journey pushed us to work together,” Kimberly shares. “We’ve learned how to show up for him as a team.

Kimberly expressed her deepest gratitude to pediatric neurosurgeon Dr. Esfahani at Kaiser Permanente Los Angeles Medical Center, who led Johsel’s surgery with extraordinary skill and compassion. Alongside his talented team, Dr. Esfahani made Johsel’s care a priority and guided him through one of the most critical moments of his young life. Kimberly also remains profoundly thankful for the entire Kaiser Permanente staff—from the doctors and surgeons to the nurses and support teams—whose dedication, compassion, and commitment carried Johsel and the family through such a critical time.

At just nine months old, Johsel is living proof that even the smallest fighters can show the greatest strength. “I thank God every day for him,” Kimberly says. “He’s already overcome so much, and I know he has so much more ahead of him.”

Now, Kimberly has connected with PBTF’s Family Health Resource Specialist, Eileen, who provides guidance and a compassionate ear. Their family has also received vital assistance from PBTF programs like the Uber Voucher Program, which ensures reliable transportation to medical appointments, and the Newly Diagnosed Resource Guidebook, a comprehensive binder to help organize and manage Johsel’s medical records.

For families navigating a pediatric brain tumor diagnosis, the Pediatric Brain Tumor Foundation offers essential resources, community, and support. Visit www.curethekids.org to learn more.