In 2015, at the age of 15, Christian was diagnosed with a Pineal Parenchymal Tumor of Intermediate Differentiation (PPTID), a very rare brain tumor. At the time he was only the sixth reported case since 2000. Like other families who receive the devastating news that their child has cancer, his family suddenly found themselves facing a whirlwind of information, appointments, and heartbreaking discussions about the future.
Because of the rarity of Christian’s tumor, there weren’t any case studies to turn to for prognosis. Doctors decided to treat it aggressively to attempt to get rid of the tumor.
“For six months our son went through treatment that consisted of chemotherapy, resection surgery and radiation. He gave up his normal teenage life to fight for his life. Words can’t explain what it is like as a parent to watch your child go through cancer. You are helpless. As much as you want to trade places, you can’t. You put on your brave face and dig deep for strength you didn’t know you had,” says Christian’s mother Shanna.
Shortly after Christian was diagnosed, Shanna came across the Pediatric Brain Tumor Foundation on Facebook, where she found an online community that understood what her family was going through. Her family also met six other families of children with a PPTID diagnosis. Together, they were able to compare notes and come together to bring more awareness to this rare type of brain tumor.
Now 8 years later, Christian has achieved two things doctors weren’t sure he would ever be able to do—celebrate eight years of being cancer-free and finish college. This May, he will graduate with his Master’s degree.
“Christian continues to face each hurdle with determination and is learning not to let his battle with cancer define him but to remind him that if he can beat cancer, he can do anything,” Shanna says.
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.
Although Christian is currently cancer-free, his diagnosis is still part of his and his family’s lives as they get used to their “new normal.” He will continue to have follow-up visits for another 5-10 years, and the entire family struggles with “scanxiety” before every MRI. Christian also has difficulty processing information, anxiety, and PTSD.
“We are still trying to discern what things Christian deals with because of treatment. Some things are obvious, but others are not. He deals with short-term memory issues, processing issues, vision issues, and fatigue. There doesn’t seem to be an answer to help with these because when you’ve had treatment in your brain, things are compromised and can’t really be repaired. You have to figure out how to live with them,” Shanna explains.
If you or a family you know has been affected by a child’s brain tumor diagnosis, we’re here to help. Visit curethekids.org/support-for-families to find resources and community support for every stage of your family’s journey – from diagnosis, through treatment, and beyond – including transitioning to adulthood. You can also connect with our Patient Family Advocacy team by completing the brief form at curethekids.org/connect-with-family-support or emailing [email protected] anytime.
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.
