Nini Alexander’s words came out slowly. Not dramatic or loud. Just heavy.
“There are still days where I struggle to get out of bed because all I can think about is how my daughter should still be here,” said Alexander after losing her daughter to pediatric brain cancer.
Alexander’s 10-year-old daughter, Jizae Gloss, died after battling diffuse intrinsic pontine glioma, commonly known as DIPG, a rare and aggressive pediatric brain cancer with no known cure.
Alexander said she still remembers the exact moment doctors gave the diagnosis after hours of waiting inside an emergency room at Loma Linda University Medical Center in California.
“I remember the coldness of the room. The silence. The waiting,” Alexander said. “I just knew something was wrong.”
According to the National Cancer Institute, DIPG is “a fast-growing brain tumor” that forms in the pons, the part of the brain stem responsible for breathing, heart rate, walking, talking and other major body functions.
The National Cancer Institute reports that around 300 children in the United States are diagnosed with DIPG every year, most commonly between the ages of 5 and 10.
Doctors told Alexander there were very few treatment options available because of where the tumor was in Jizae’s brain.
“They told me she would likely only live another six to nine months,” Alexander said. “I remember collapsing. I remember feeling like my entire world stopped.”
The disease is one of the deadliest forms of childhood cancer. Most children diagnosed with DIPG do not survive longer than two years after diagnosis, according to the National Cancer Institute.
For Alexander, those statistics quickly became personal.
The Spokesman will examine the effect of cancer on the Morgan community, from the student body to faculty, staff, administrators, and alumni in its Black Health Matters: Cancer on Campus series.
Childhood cancer remains one of the leading causes of death by disease among children in the United States, yet pediatric cancer research receives less than 4% of federal cancer research funding.
Advocates and researchers say the lack of funding slows the development of safer treatments, limits clinical trials and affects access to specialized care.
According to the National Cancer Institute, pediatric cancers are biologically different from adult cancers because many childhood cancers are caused by genetic mutations rather than lifestyle or environmental factors.
Because childhood cancers are rare, researchers often struggle to secure enough funding and participants for clinical trials.
Also, pharmaceutical companies are often less likely to invest heavily in treatments for diseases affecting smaller patient populations, making federal grants and nonprofit funding especially important.
Jess Kean, communications director for Children’s Cancer Cause, said limited funding affects every stage of pediatric cancer research.
“Limited funding impacts every stage of pediatric cancer research, from early discovery to clinical trials,” Kean said. “Children deserve treatments designed specifically for them, not simply adapted from adult cancer therapies.”
Organizations such as Children’s Cancer Cause, CureSearch for Children’s Cancer and the Pediatric Cancer Research Foundation continue advocating for increased federal funding and support for families navigating treatment.
Tasha Museles, president of The Children’s Cancer Foundation, said more public attention is needed surrounding childhood cancer.
“Families facing pediatric cancer deserve support, attention and access to accurate information and care,” Museles said.
Many argue pediatric cancer receives less attention because childhood cancers affect fewer patients overall compared with adult cancers.
For families, however, the issue becomes real the moment a child receives a diagnosis.
“People don’t realize that when a child gets cancer, the whole family’s life stops too,” Alexander said.
During Jizae’s treatment, Alexander said she spent nearly an entire month living inside hospitals while balancing responsibilities involving her other children.
“I had to quit my job and become her full-time caregiver,” Alexander said. “Financially, emotionally, mentally and physically, our family suffered.”
Data from the National Cancer Institute indicates that treatment for DIPG often includes radiation therapy, chemotherapy and clinical trials, although most treatments focus on slowing the cancer rather than curing it.
However, many families face barriers accessing advanced treatment because specialized hospitals and clinical trials are usually concentrated in large medical centers.
For underserved families, especially those living far from major pediatric hospitals, accessing specialized care can become financially and emotionally overwhelming.
Some families temporarily relocate during treatment, travel across multiple states for clinical trials or spend weeks living inside hospitals.
“You still have to somehow keep going for everybody else around you even when your whole world feels like it’s falling apart,” Alexander said.
Research has also identified racial and socioeconomic disparities in pediatric cancer outcomes.
Studies show Black children often experience worse outcomes and lower survival rates for certain cancers compared with white children. Those disparities are linked to factors such as healthcare access, insurance coverage, transportation, income and delayed diagnosis.
A National Cancer Institute-supported study led by Dr. Lori Wiener examined disparities in end-of-life care among adolescents and young adults living with advanced cancer.
“AYAs experience high unmet need for psychosocial and spiritual care and communication,” according to Wiener’s study.
The study also found that “Black, Asian and Hispanic AYAs are at risk for inferior quality care relative to White patients.”
“I wish people understood the trauma that comes with hearing your child cry in pain and not being able to fix it,” Alexander said. “The trauma of hospital rooms becoming your second home. The trauma of trying to stay strong for everybody while silently breaking apart inside.”
Maryland officials have recently taken steps to address pediatric cancer research funding through state-supported initiatives.
In 2022, Maryland established the Maryland Pediatric Cancer Fund to support pediatric cancer research through grants awarded to physicians, hospitals, laboratories and educational institutions.
In 2024, the state expanded those efforts by creating the Maryland Pediatric Cancer Research Commission, which oversees grant awards and reviews research proposals.
Programs such as Maryland’s Pediatric Cancer Research Commission are important because they help fill gaps left by limited federal funding. Still, many families and advocacy groups believe broader national action is needed.
“Childhood cancer deserves far more attention and funding than it currently receives,” Alexander said. “These children deserve more urgency. More compassion. More research.”
Now, Alexander hopes Jizae’s story can help raise awareness surrounding pediatric cancer funding and healthcare disparities.
“I hope her life encourages more funding for childhood cancer research,” Alexander said. “I hope it pushes healthcare systems to fight harder for children like Jizae.”
Alexander described Jizae as fearless, caring and full of life.
“She was the kind of child people naturally gravitated toward,” Alexander said. “Even during some of the hardest moments, she still found ways to make other people smile.”
Despite the grief surrounding her daughter’s death, Alexander continues sharing Jizae’s story because she hopes future families experience better outcomes.
“I pray that one day there will finally be a cure for DIPG so no other parent has to hear the words I heard,” Alexander said.
“My daughter deserved more. She deserved to grow up. She deserved to become a teenager. She deserved to experience life. She deserved to live. She was only 10 years old.”
This student’s story is the product of a semester-long reporting project from the MMJN 350 class of the Multimedia Journalism department of the School of Global Journalism and Communication.
