Joseph was born prematurely at 33 weeks. His true fighting nature and sheer stubbornness had him out of the NICU in under three months. Joseph was a captivating, active and fun baby and around age 3 we noticed that something was amiss. Joseph would have periods of time when he would get a far-away look followed by a period of being very ill. After some investigation we met with the Children’s Hospital of Philadelphia (CHOP) neurology team. Several visits, further testing and an MRI revealed that Joseph was having seizures caused by a brain tumor in his right temporal lobe. We received this devastating news Mother’s Day Weekend, 2021. I used to think that the worst day a parent could have been finding out about a potentially fatal diagnosis for their child, but I was wrong.
The worst days are helplessly watching your child battle something you can’t even explain to them. The summer of 2021 brought more time spent at CHOP, more testing and multiple daily seizures and a surgical date was set. One of the most difficult decisions we faced was how aggressive to be with his surgical procedure. His right temporal lobe would need to be removed, but several other areas of his brain were labeled as “concerning.” As a family, we decided that being as aggressive as possible would ultimately be the best course of action over the possibility of multiple surgeries. This meant that there was a chance Joseph would wake up from surgery without any memory of his life before surgery. Because of this, we made a Bucket List with him and were able to complete and document all of Joseph’s items (except for meeting Taylor Swift!) before his surgery.
On September 27, at 6 am, I walked my sweet, tired, and brave boy into the operating room and kissed him as he went to sleep. It took 8 hours for the neurosurgeon to remove Joseph’s right temporal lobe, amygdala, hippocampus, temporal gyrus, and a portion of his white matter. He was brought to the ICU after his surgery, and he made it immediately clear to us that despite all odds his memory was completely intact!
Joseph met the task of recovering from his surgery head on; after a week in the hospital, he was home and playing miniature golf despite the loss of part of his visual field. Joseph has been undergoing physical therapy, occupational therapy and speech therapy since his first surgery along with innumerable appointments at CHOP to monitor his progress and modify interventions. He has experienced left sided weakness as well as several other expected outcomes of surgery but none of this stopped him from going to preschool and playing T ball. Through it all, he has remained the same courageous and loving boy.
In May of 2022 Joseph experienced his first postoperative seizure. This was extremely unexpected even though we were monitoring a cyst and several other findings via monthly MRI. So again, on June 1, 2022, we took another walk into the operating room at CHOP for Joseph’s second surgery. While not as extensive as his first procedure, this was a very intricate procedure. We waited again and after 3 hours the neurosurgeon reported that he had some unexpected findings. A layer covering Joseph’s brain had to be replaced as well as a new route for the fluid around his brain needed to be made. The scarring from his first surgery presented several challenges for the surgeon during this second surgery.
After only 3 days in the hospital, Joseph was home and recovering with his family around him. He is still encountering challenges, but his true fighting nature has him conquering each challenge. We are still monitoring him closely with MRIs and frequent visits to the neurologist and oncologist. Joseph’s sweet spirit and soulful eyes have sustained our hearts on this journey. We know there are still mountains to climb with him, but we also know he will be singing Taylor Swift songs the whole way!