Nicholas may be our friendly neighborhood Spider-Man, but he had to defeat his own villain to become the superhero he is today.
When Jessica was pregnant with her son, Nicholas, she was having abnormal pains in her stomach. She had an ultrasound and discovered that Nicholas had two lesions on his brain. Although this news was frightening, Nicholas was born without issues.
After he was born, Nicholas showed abnormal delays and had weakness on the right side of his body. At age one, he had an MRI that discovered the right lesion on his brain diminished; however, the left lesion stayed. The left lesion was only pea-sized, so doctors continued to monitor his brain for the next several months. On February 3, 2015, Nicholas was diagnosed with Ganglioglioma, a rare type of brain tumor.
He had an ablation surgery soon after and found it was not cancerous, a relief to his mother who watched her grandfather fight brain cancer years before. The tumor later showed progression and doctors decided it was time to do craniotomy surgery since Nicholas was having recurring symptoms, including frequent seizures.
Jessica was grateful to have the support of the Pediatric Brain Tumor Foundation and the peer-to-peer mentoring program as Nicholas was enduring his brain tumor journey.
“Dealing with the fact that your child has any kind of diagnosis is very, very hard. Watching your child go through something that you don’t want to even think about like a brain tumor is even harder. It’s great knowing the Pediatric Brain Tumor Foundation is always there for families like us and other children and teenagers with pediatric brain tumors. Having someone to talk to, listen to you while you express your feelings, and walk you through the process, is the best,” says Jessica
In 2022, Nicholas will hit his 5-year milestone of being brain tumor– free and his family describes him as the happiest nine-year-old who brings smiles to everyone’s faces. He still has some daily struggles with anxiety and car rides, but his family is thrilled with his progress. Nicholas is almost reading at age level, a huge achievement as he struggled with delays due to his pediatric brain tumor diagnosis.
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.
PBTF’s Ride for Kids event is always a highlight in the family’s year. While Nicholas has yet to ride on the back of a motorcycle, he loves riding alongside them as the parade of bikes drive through his town each year. As a huge lover of tractors, firetrucks, cars, and motorcycles, Ride for Kids is a perfect event for him.
While Jessica loves the experience of the event and the joy it brings Nicholas, she also enjoys meeting others with similar stories and seeing all the supporters there to fundraise for kids like Nicholas. She would recommend all newly diagnosed families attend events like Ride for Kids to visually see how many people care and are there to help.
“Knowing the fact that they are recognizing these kids, they’re helping these kids, and raising money for the Pediatric Brain Tumor Foundation to help cure these kids is incredible.”
Nicholas has defeated a huge villain in his life at such a young age and has continued to beat the odds year after year. He truly is a superhero to his family, friends, and all of us at PBTF.
PBTF offers opportunities year-round to meet other families, survivors, and people who care about children with brain tumors. Join our email list to stay up-to-date about PBTF resources and events in your community: www.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 FDA has approved Day One Biopharmaceuticals’ OJEMDA (tovorafenib) for treating pediatric low-grade glioma (pLGG), the most common brain tumor diagnosed in children. The availability of this first-of-its-kind treatment represents an important, long-awaited moment for many pLGG patients. It also marks a significant milestone in the Pediatric Brain Tumor Foundation’s efforts to accelerate new treatment options for all children with brain tumors.
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.
