Jonathan is an energetic and loving 5-year-old who loves superheroes, boxing, family movie nights and playing with his cousins. His favorite superhero is the original Incredible Hulk. He easily changes from Bruce Banner to the Hulk in a matter of seconds and we all know and love his famous #HULKSMASH move.
In November of 2019, Jonathan started complaining of headaches, neck pain and occasionally vomiting. Shortly after, he was diagnosed with the Flu, so his complaints were warranted as symptoms of the Flu. His parents, Elizabeth and Jonathan Sr. did not notice a real improvement and on January 13, 2020, after a second trip to the ER and another positive Flu diagnosis, a CT Scan revealed excessive fluid caused by the presence of a brain tumor.
Since January, Jonathan has endured 4 major brain surgeries to alleviate the fluid pressure and remove the tumor. Jonathan's symptoms persisted and that led our family to seek expert medical attention at Philadelphia Children's Hospital where they specialize in pediatric brain tumors. The entire family relocated from Florida in search of hope for surgery and treatment.
Incredibly thankful to have made it to CHOP and grateful for the wonderful Neuro-Oncology team that oversees his care. In March of 2020 Jonathan's tumor was resected, and pathology confirmed Jonathan's brain tumor was malignant and metastatic. This journey has been bittersweet. The darkness that foreshadows the words "pediatric brain tumor" has tried many times to take over our circumstances.
After multiple MRI’s, CT scans, pokes, blood draws, NG tubes, ports, the insertion of a G-Tube (feeding tube), Pheresis Catheter placement and removal, Double lumen broviac lines, 5 cycles of chemotherapy, 3 stem cell transplants, physical therapy, occupational therapy and countless other procedures – Jonathan is still Hulk Strong.
During this critical and unsettling time of the COVID-19 pandemic, Jonathan has not been able to see his extended family. The beauty of virtual hugs has become a daily practice for our family.
Instagram - @jonathansjourney2020