I remember April 28th, 2018 – the day my son Ezra was diagnosed with a brain tumor.
I remember his perfect round face and how he ran around on toddler feet all morning. I remember how swollen my eyes were from crying later that night having lived through my worst nightmare, wondering if I’d ever be okay again.
Most parents never think this could be their story one day, too. Right up until the minute we heard the words “your baby has a large mass in his brain” I honestly hadn’t ever considered that babies could get brain cancer.
May is Brain Tumor Awareness Month, and the Pediatric Brain Tumor Foundation community will recognize this disease’s impact on families. We will share our stories. We will call on you and others to take action.
Children with brain cancer can’t wait another week, another day, another minute for your support. When you donate to the Pediatric Brain Tumor Foundation, you help fund life-changing research and provide families with the resources and support they need. Don’t let pediatric brain cancer steal another future.
I’m honored to be part of the movement to end childhood brain cancer and to share our story with you. Throughout our journey, my family has gained perspective. I used to make myself sick worrying about long-term things. I mourned that Ezra wouldn’t be able to play sports again because of his vision loss. My bones ached that he would never be able to drive. Then we received news that Ezra’s tumor had grown and his chemotherapy was no longer working. Doctors tried surgery, which lasted nine hours and made little difference in his outlook. To make matters worse, Ezra’s incision began leaking cerebral fluid, he felt unimaginable pain, and he began vomiting, which required a shunt.
It was an impossible situation.
My perspective changed. Worries about the future became worries about this day, this minute. I no longer trouble myself with the future. Perspective lies in the present. It’s the painful shock of a seasoned veteran who doesn’t want to see this disease happen to other beautiful babies.
We need cures.We need action.We need you to join the movement and donate today.
– Ramona King, Ezra’s Mom
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
In June 2018, Valentina was diagnosed with a pediatric low-grade glioma with a BRAF mutation. At the time, she was only one year old. Surgery was not an option, so her family had two choices for treatment—traditional chemotherapy or an experimental treatment suitable for her type of mutation.
Combining her love for reading and desire to give back to help kids with brain tumors like her, Zoe created Books 4 Brains to raise money for pediatric brain cancer research. Join her upcoming Books 4 Brains read-a-thon and support the Pediatric Brain Tumor Foundation's research funding efforts.
A new bill introduced in the New York State Legislature by Senator Shelley B. Mayer and Assembly Member Christopher Burdick will help remove some of the barriers standing between children with cancer and the learning accommodations they need to succeed in school. The Pediatric Cancer Neuropsychological Needs Assessment Act (NY State S.8750) would require insurers to provide coverage for neuropsychological assessments for children diagnosed with cancer that affects brain development or function.
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
