Jakob’s brain tumor story started in 5th grade when he started developing troubling symptoms such as hand tremors, frequent headaches, weakness, and nausea. Over the course of a year and a half, the symptoms became exponentially worse. He would come home from school, lay down on the couch, and wouldn’t be able to get up for the rest of the night. The tremors became so severe that he lost the ability to write and even drink a glass of water by himself. He knew something was wrong.
On March 21, 2015, Jakob and his parents went to the local children’s hospital in Ottawa, Canada to get an MRI to investigate the cause of his symptoms. His doctor found a golf-ball sized brain tumor, and he was diagnosed with low-grade astrocytoma.
While the tumor was considered inoperable, an invasive (but vital) medical procedure was able to relieve many of his symptoms.Through that procedure and accompanying biopsy, the doctors determined the tumor was non-malignant. Throughout the process, Jakob was able to stay positive and optimistic.
“Immediately after I was diagnosed, I had two very conflicting thoughts: My life is forever changed; this diagnosis – this course of life — is entirely different than what I envisioned. But also, I finally know what I’m up against. I can tackle this,” said Jakob.
The next year and a half was a flurry of frequent appointments. Jakob went through a 70-week chemotherapy protocol every Friday, in order to allow a weekend of recovery before school on Monday. His resiliency was immediately apparent. After his first treatment in May 2015, Jakob and his father participated in a 3-mile fundraising run for cancer research – and his father completed the run through tears of pride and joy for his son’s strength and perseverance.
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.
Jakob finished chemo in September 2016, and he continues to have regular MRIs to check on the tumor. The tumor is still there; however, it is stable and the time between his MRIs has grown larger and larger. His prognosis looks very good, and Jakob is able to go to school, spend time with friends, and share his story and experiences with others.
Throughout treatment, Jakob made an effort to continue doing what he loved, like playing hockey and ultimate frisbee — a passion he shares with his entire family. He wants to live life to the fullest every day and continue to do what he loves despite the brain tumor. He’s proud of himself that he was able to continue living life to the fullest through difficult times.
Jakob has been able to share his story by speaking at events at schools, corporate and charity events, and various businesses to spread awareness and fundraise for pediatric brain tumor research and families impacted by this disease. It has been incredibly meaningful for him to share his story and inspire others. He knows people are still going through their own journeys like what he went through years ago, and he’s honored to share the lessons he learned and bring positivity to brighten others’ days.
“There was one instance where I spoke at a school and we got an email a few days later from a mom saying I spoke at her seven-year-old son’s school. He was so motivated that he went around his neighborhood that night, door to door, collecting change from each of his neighbors. He ended up with $21.83, and he was so proud. That story alone has kept me going since then.”
Jakob shared that his diagnosis gave him his personal meaning in life of being able to share, support, and give back where he can. It streamlined his goals and gave him a clearer picture of what he wants out of life. In the future, he wants to bring the lessons he learned in childhood into his adult life to continue to help and support people where he can.
He recently started his 2nd year of Business School at one of the local universities, and has been continuing to share his messages of hope, support and resiliency.
The Pediatric Brain Tumor Foundation is committed to leading the way toward a future without childhood brain tumors. You can help us fund the most promising research, direct resources to families in need, and advocate for better treatments and access to care by supporting the Pediatric Brain Tumor Foundation this Giving Tuesday. Save the date of November 29 and sign up to receive updates about how you can make a difference: http://www.curethekids.org/stay-connected/ or make your Giving Tuesday gift early at www.curethekids.org/givingtuesday.
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.
