By: Trish Adkins
Eighteen years ago, when my daughter Lily was diagnosed with a brain tumor, I knew nothing. I guessed that brain tumors in 14-month-old babies were rare. I knew this diagnosis would devastate us, but I didn’t know if her tumor was “cancer” or even really understand how cancer worked. I didn’t know there were treatments and, if there were treatments, if they would leave Lily severely disabled. I didn’t know there were other families like ours, some just down the hall in the PICU, facing the same grim, terrifying diagnosis.
And I didn’t know if my daughter would survive.
She did, though. Today, Lily is 19 years old. This May marks 18 years since her diagnosis with a malignant pediatric brain tumor called ependymoma. It also marks the end of her freshman year in college. 
The year Lily was diagnosed, 2007, the five-year survival rate for her tumor type was 75%. I know that sounds like the odds were in her favor. But, at the time of her diagnosis, I had a different perspective: there is a 25% chance my baby will die.
And for kids diagnosed, today, with one of the hundreds of other pediatric brain tumors, five-year survival rates are the same now, as they were on that day in May 2007 for Lily.
According to data collected by the Central Brain Tumor Registry of the United States (CBTRUS), the survival rates for children with brain tumors have not changed significantly over the past 45 years despite major improvements made in the treatment of other cancers. As a result, brain tumors are both the most common type of pediatric cancer and the deadliest in children ages 0-19.
Every May, while my family marks the anniversary of the day Lily was diagnosed, the childhood cancer community also marks Brain Tumor Awareness Month. It’s a month when you will see gray ribbons in your social media feeds, and you will see Alex’s Lemonade Stand Foundation (ALSF) share brain tumor facts, exciting and hopeful breakthroughs, and inspiring stories of children who have and are battling brain tumors. To understand why this awareness matters so deeply — and why the need for progress feels so urgent — here are some key facts about pediatric brain tumors that everyone should know:
1. There are hundreds of pediatric brain tumors.
The most common types of pediatric brain tumors are astrocytoma, medulloblastoma, ependymoma, DIPG, and other high-grade gliomas, each with their own unique biological and genetic characteristics. There is the continual, pressing need to understand the biology and genetics of brain tumors to find safer treatments and cures.
There has been significant progress made in classifying brain tumors. For example, medulloblastoma, which once was considered one type of tumor, has been split into several types defined more specifically by their molecular components (the cell type, the genes and proteins present in the tumor). This classification has guided some new insights into treatments that are less harsh, giving hope for all children with brain tumors.
2. Location is everything.
Brain tumors can appear anywhere in the brain or spine, but over 60% of childhood cancer tumors are found in the posterior fossa. The posterior fossa is located at the base of the skull and houses two critical structures: the cerebellum and the brain stem. These two structures are responsible for vital life functions like balance, coordination, blood pressure and breathing. As a result, both treatment and the brain tumor itself can cause dangerous, life-threatening side effects.
These tumors are also housed within the closed central nervous system. While drugs do cross the blood-brain barrier, scientists are still working to understand why some drugs make it to the brain and others do not. In addition, the central nervous system has protective mechanisms to keep out things it views as “bad,” which could include treatments like chemotherapy.
3. Treatments, even when effective, come with long term side effects.
The mainstays of pediatric brain tumor treatments — surgery, radiation and chemotherapy — all come with the potential for short- and long-term side effects. Up to two-thirds of kids who receive brain tumor treatment live with life-long adverse medical and cognitive consequences. Radiation is known to cause neurocognitive issues in a developing brain. Surgery can impact the functions of critical structures in the brain. Chemotherapy can cause high frequency hearing loss and cardiac dysfunction.
And when frontline treatment fails, brain tumors become a terminal disease and families turn to clinical trials for hope.
4. Five-year survival rates don’t tell the whole story.
While overall five-year survival rates are over 75%, the survival rates vary greatly by age and type of tumor. Infants under 1 year old, who have the highest incidence of brain tumors, also have the poorest survival rate.
High-grade gliomas, like diffuse intrinsic pontine glioma (DIPG), have the poorest prognosis. For these children, only half survive more than one year from diagnosis. And only 10% survive two years from diagnosis.
5. But, right now, we are poised for cures.
The past 20 years of investment in pediatric brain tumor research has paid off. ALSF has funded more than 106 brain tumor projects since 2000 and is continuing to support the work of pediatric neuro-oncology researchers like Mariella Filbin, who is studying a drug that could slow the growth of DIPG tumors, Michelle Monje, who is trialing CAR-T immunotherapy for high-grade gliomas, and Ted Johnson, whose immunotherapy trial for relapsed pediatric brain tumors has led to cures for kids, like Brynn.
May is Brain Tumor Awareness Month. You can learn more about pediatric brain tumors and the pressing need for more research here (and you can share these facts on social media!) Alex’s Lemonade Stand Foundation founder Alex Scott believed that together, we would find cures for childhood cancer. In that spirit, you can sign up to be part of our monthly giving program, the One Cup at a Time Club! Learn more here.
