Meet Braeden
In May of 2022, we noticed Braeden holding up his arm folded against his body during soccer games. We took him to a pediatric orthopedist who noticed scoliosis but no apparent injury to his arm after an x-ray. We thought maybe it was just a habit and his coaches would just say “arm” to remind Braeden to put it down. (Little did we know he did not have any control of this and we feel guilty about nagging him about it now). In June, Braeden started exhibiting a slight foot drop so we quickly made an appointment with a neurologist. The neurologist ordered an MRI (outpatient) and felt it was related to a virus or MS, brain tumor was low on her concerns.
We decided we did not want to wait on an outpatient MRI as that could take weeks to be cleared by insurance. We took Braeden to CHOP emergency room after his 5th grade picnic celebrating the end of his elementary school. He would be beginning middle school in the fall. Once at the CHOP ER, they performed an extensive neurological review and MRI. Our worst fears were confirmed. The MRI showed a 4cm mass mid-brain in his basil ganglia. Braeden was immediately admitted to ICU for three nights while they prepared for surgery. Surgery was delayed while they ran blood work to rule out one type of tumor. After an MRI of spine was clear they agreed to release him before the scheduled surgery. We were able to spend one final weekend with family and friends before returning for surgery.
We went back to Chop on Wednesday June 22nd, 2022 for Braeden’s brain surgery. The surgery was difficult, and Braeden unfortunately suffered complications during the surgery which led to a thirty day hospital stay where he was not able to see his siblings due to covid restrictions. Braeden had to learn how to walk again through hard work and perseverence.
Braeden came home on July 15th. He continues to work hard up until this day to regain his strength back from complications due to the first surgery. In September of 2022, Braeden started middle school -only attending school half-day. I picked him up to drive him to his many PT and OT appointments, doctor’s appointments, and four hours of home instruction a week for the classes he missed at school due to being sick from chemotherapy. We were hoping he would not have many side effects from this but unfortunately he did. He got so sick from his first treatment that he had to be seen in the ER at Chop as he could not keep anything down for three days. He also had to go for weekly blood tests for his platelet count. This turned into blood tests multiple times a week when his platelets dropped to see if he needed a transfusion. His platelets did drop after his second, third, and fourth treatments, and he received three platelet transfusions.
After months of speaking to a surgeon at St. Jude, and also getting second and third opinions from other surgeons, all surgeons agreed Braeden should have a second brain surgery to attempt a complete resection. This was a very difficult decision for us, because we did not know what deficits he would wake up with from another surgery. Although very apprehensive, we collectively decided as a family that the next necessary step in Braeden’s journey was to have another brain surgery. We will flew to St. Jude/LeBonheur in Memphis where Braeden had his second brain surgeryon February 21st, 2023. This surgery was a complete success! His amazing surgeon was able to remove Braeden's entire tumor, which we didn't even think was possible. After this surgery, he was released in under 48 hours and didn't even need the ICU to recover! He recovered in a regular room, and we were on a plane back to NJ less than a week post-op. Braeden walked out of this surgery the same way he walked in, but without his tumor. We’ve traveled back to Memphis for MRI’s since his surgery, and we are elated to see his scans continue to be clear, with no residual or new tumor growth!
He no longer has any restrictions so he can ride those rollercoasters in the theme parks now as well and boogie board and swim in the ocean with his friends. He has picked up some new hobbies this year including snowboarding, horseback riding, pickleball, and he even started a disc golf club at the Intermediate School! He has also returned to the golf course, and has become an honorary member of the Princeton University Golf Team. Braeden recently started eighth grade, and is thriving. He is now able to attend school full day, and everyday- lives life to the fullest!