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Nicholas’ Pediatric Brain Tumor Journey and Finding Community in the PBTF

04/27/22

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. 

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.