In 2018, Christina and Selvyn noticed their son Nicholas lost a bit of weight and started vomiting often. Christina took him to the emergency room, and they prescribed nausea pills and sent Nicholas home. Nothing changed, so they went back to get answers.
After a CT scan and an MRI, doctors found a brain tumor on Nicholas’ 10th birthday—July 1, 2018.
After diagnosis, Nicholas had surgery in his home state of Georgia to remove the tumor. Then Christina and Nicholas went to Florida for radiation and proton therapy. His tumor initially responded to treatment, but came back exactly a year later. Nicholas went through another operation, chemotherapy, and radiation, but the doctors were unable to remove all of it. His family enrolled him in a clinical trial in Georgia, but the tumor continued to grow. After attempts to receive surgery in Philadelphia, they traveled to Texas and a doctor was able to remove some but not all of the tumor due to the location near the spinal cord. The tumor, unfortunately, continued to grow.
On December 3, 2020, Nicholas passed away. Although his family’s journey did not end as they hoped, they were grateful the surgery in Texas relieved his pain.
The family separation and financial strain was very difficult for Nicholas’ entire family. While Christina traveled with Nicholas, Selvyn and their daughter Melissa had to stay in Georgia to work and attend school. The family was used to a two-income household; however, Christina stopped working in order to care for Nicholas during his treatment.
Bills kept coming no matter what, and treatment costs depended on insurance approvals. In addition, their travel costs from hospital to hospital added up, and the family spent a great amount of money on gas and travel. The Pediatric Brain Tumor Foundation helped relieve some of the family’s financial strain through our emergency assistance Butterfly Fund.
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.
“When we were still fighting, PBTF helped us a lot financially with all of our travels and everything we had to do. Without them, we probably wouldn’t have been able to go to Texas and get that surgery, and who knows how much pain he could have been in when he passed,” said Christina.
Their family continues moving forward by holding onto memories of Nicholas and finding strength in his sister, Melissa. They often reminisce on the good times they had as a family, like when they went to Universal Studios. Melissa and Nicholas loved the Harry Potter rides and the interactive wands within the park.
PBTF was able to give Nicholas and his family other memories by connecting them with the pediatric brain tumor community. They enjoyed attending local holiday parties and seeing Ride for Kids motorcyclists ride by their house – providing a family of people who understood what Nicholas, his parents and sister were going through and helping them figure out the path to take throughout their journey.
“I would tell a newly diagnosed family you aren’t alone and that PBTF really helps you make memories that you can hold on to. Those are memories we still keep, and we still watch the videos of the motorcycle ride. Those are things that we really hold in our hearts. PBTF is there for you, so you are not alone and you create a whole other family.”
PBTF offers resources, including financial assistance, to help families throughout their pediatric brain tumor journey. To stay connected and learn more about family resources, visit: curethekids.org/stay-connected.
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.
The Pediatric Brain Tumor Foundation (PBTF) proudly announces an infusion of $1 million to help researchers, led by Dana-Farber Cancer Institute’s Drs. Pratiti (Mimi) Bandopadhayay and Rameen Beroukhim, launch a study into a novel therapeutic target and expand their research into overcoming treatment resistance and rebound growth.
Recently, the Accelerating Kids' Access to Care Act gained significant momentum in Congress when Charlie, a 12-year-old brain tumor survivor and advocate with the Pediatric Brain Tumor Foundation, testified to the U.S. Senate Finance Committee about the hurdles families face when seeking treatment for their child. Now, to see it become law requires your immediate action.
