Germ Cell tumors of the brain are rare, accounting for about 4% of brain tumors in children. Most Germ Cell tumors appear in the ovaries or testes, but they can also get trapped in the brain during the fetal period.
There are two types of Germ Cell tumors of the brain. They are Germinomas (Pure Germ Cell tumors which are easy to treat) and Non-Germinomas (these secrete chemicals into the spinal fluid and bloodstream and require more intensive treatment). If they have aspects of both, they are called Mixed Germ Cell tumors, which are generally more challenging to treat. The Non-Germinoma Germ Cell tumors are rare tumors that occur in adolescents and young adults.
They are mostly seen in the pineal and suprasellar regions of the brain and account for 1%-3% of cases.
Our son Nicholas was diagnosed with a brain tumor in May of 2021. Nick was 14 years old at the time and finishing up 8th grade. Nick didn’t show the typical symptoms that raise awareness for a brain tumor. He became withdrawn and fatigued.
We thought he was possibly depressed. We reached out to his pediatrician and school counselor. By the end of the week he was off balance and had a tremor in his left hand. That’s when his pediatrician sent us directly to Boston Children’s Hospital. Nick was immediately put on steroids to decrease swelling in the brain.
He then had a temporary drain placed and a biopsy. The biopsy came back as a Mixed Germ cell tumor in the pineal region of the brain. He began chemo right away in hopes to shrink the tumor since it was a risky surgery at the time.
A few months into treatment he was diagnosed with Growing Teratoma Syndrom(the tumor was growing rapidly instead of shrinking) and needed to have a craniotomy to resect the tumor. After a 12 hour surgery, Nick had a successful resection where 100% of the tumor was removed. He then completed the rest of his chemo and went on to six weeks of radiation to the brain and spine.
A six week post radiation MRI showed that a lesion was on the spine as well as a few lesions on the brain. Nick underwent surgery to remove the lesion on the spine. The pathology reported that this was a Non-Germinomatous Yolk Sac tumor. Nick began more chemo, which unfortunately did not work.
The next option was an Autologous Stem Cell Transplant, where Nick would receive his own stem cells after high dose chemo. Nick spent an entire month in the hospital during transplant which was extremely tough on his body after receiving so much prior treatment. One month after transplant Nick’s MRI showed that the tumors were still there and spreading to more parts of the brain.
We were running out of options and searching the world for answers and trials. His oncology team decided to start him on immunotherapy while awaiting a trial to open. In May of 2023, Nick slowly lost the ability to walk and use his left side. The tumor on the brain stem was increasing in size. We decided to begin radiation right away in hopes to take pressure off the brain stem so that he could regain the ability to walk.
We were two days away from radiation when Nick ended up needing an emergency surgery to place a drain to reduce fluid in the brain. Nick made it to one session of radiation and then we were given the devastating news that there was nothing more we could do to fight this terrible disease.
Unfortunately, there is no cure for Recurrent Germ Cell tumors that he had. This was something that we were aware of early on but we were determined to beat the odds and continue the fight. Nick never stopped fighting and we promise to continue the fight for him!
Our goal for the Nick Strong Foundation is to honor our son and keep his legacy alive by raising awareness and helping others who are faced with the horrific news that their child has cancer. We were fortunate enough to be surrounded by a loving family, amazing friends and an extremely supportive community. Without them, we wouldn’t have been able to get through each day and give 100% to Nick’s medical needs and take care of our other children as well.
Your donations will go towards funding for the following initiatives:
- Funding research for Pediatric Germ Cell Tumors.
- Financial assistance for families going through cancer treatment.
- Holiday gifts for patients at Boston Children’s Hospital on the Neuro-Oncology unit.
- Holiday gifts for Jimmy Fund patients
- Scholarship to the FHS lax boosters for a high school senior lacrosse player who displays similar traits and characteristics to Nick, including humility, courage, determination, resilience, perseverance and inspiration on and off the field.
If you or someone you know is one of these families, we encourage and welcome you to apply here for assistance or more information.