On January 25 of this year, two-year-old Ian’s mom, Yaimary, noticed her son walking with his head consistently tilted at an odd angle. Concerned, she scheduled an appointment with his pediatrician that same day. After a thorough examination, the pediatrician sent Ian and his mom directly to the emergency room where a CT scan revealed a mass at the back of the child’s head.
Following this discovery, Ian was referred to Dell Children’s Medical Center at The University of Texas where an MRI revealed a golf-ball sized pilocytic astrocytoma tumor in the back of his brain.
“The next morning, we heard from the surgeon who reviewed the MRI,” says Yaimary. “He explained Ian needed surgery immediately.” That very afternoon, the toddler underwent an operation to successfully remove his tumor.
Four days later, on January 30, Ian was discharged from the hospital walking normally without assistance. Surgery and tests confirmed Ian’s tumor was low-grade, and that he would not need chemotherapy or radiation follow-up.
“This experience impacted us a lot,” Yaimary reflects. “When we got the diagnosis, we all cried. The possible side effects sounded horrible. It felt like the world was against us. But all the doctors, nurses, and social workers were fantastic, and Ian’s recovery and prognosis are great.”
While Ian’s family knows there is a possibility his tumor could return, they are grateful it was detected in time for him to undergo effective treatment.
“The medical staff told me again and again how important it was that I noticed Ian’s symptoms and responded so quickly. It was because we caught things so early that Ian was able to be treated successfully and recover so quickly.”
Yaimary emphasizes the importance of parents being aware of any changes in their children’s appearance or behavior. “Pay attention every day,” she urges. “Be aware of what’s going on with your children. If you notice something isn’t right, take them to the pediatrician. Ian is where he is today because we caught his brain tumor early.”
May was Ian’s first post-surgery MRI and he will have follow-up MRIs every 3 months. Today he is fully back to being the playful, fun-loving child he always was, enjoying regular trips to the park and playing with his many friends at daycare.
Thanks to the incredible Pediatric Brain Tumor Foundation community, families like Ian’s have hope. When you donate, fundraise, or volunteer with PBTF, you speed the development of safer diagnostics and more effective treatments for children with brain cancer.
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Alyssa was a bright and energetic child, excited to start sixth grade. She had just switched schools, and the upcoming year held the promise of new friendships and opportunities. But soon, Alyssa's journey took an unexpected and heart-wrenching turn.
On March 7, 2023, 2-year-old Trey was rushed to the ER with excessive vomiting and extreme fatigue. “That’s what drove us to the emergency room that night,” explains Trey’s mother, Ebony. “But we had no idea the magnitude of the diagnosis [we would receive].”
It’s been a year and a half since Graham, who is four, was diagnosed with a pilocytic astrocytoma, a low-grade, slow-growing brain tumor. “On Christmas morning Graham was super lethargic. He didn’t want to wake up, which we assumed was due to the long day of travel the day before. But then he had no interest in opening presents. All he wanted to do was nap,” his mother, Abbie, recalls.
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
The Pediatric Brain Tumor Foundation today announced the appointment of Ursula Burns and Jordan Wertlieb as inaugural members of the organization’s new Advisory Board. Burns and Wertlieb offer their exceptional business acumen and experience to PBTF, the largest patient advocacy funder of pediatric brain tumor research.
