Jonathan is full of energy and 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.
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.
3/10/2021 Update on Jonathan's 6th Birthday: Jonathan is an incredible warrior that has just completed his treatment plan in Philadelphia. His family returned back to Florida in late December. Jonathan is feeling great and excited to be back home! He now has his MRI’s scheduled for every 3 months, with his next on March 30th.
3/10/2023 Update on Jonathan’s 8th Birthday:
After a cancer diagnosis in 2020, we thought the worst was over, but little did we know or were prepared for a diagnosis of Radiation Necrosis in 2021. This certainly was a game changer. Our family relocated temporarily to Orlando for his treatment. He quickly began Hyperbaric Oxygen Therapy, and completed 90 dives. He was given Avastin infusions and weekly sessions of physical, occupational & speech therapies. Jonathan lost his mobility due to steroids he gained an incredible amount of weight in such a short time. His speech became very slow & slurred that we would have to translate what he was saying or trying to say. It was scary and unpredictable, but by the grace of God, here he is.
His most recent MRI revealed no evidence of disease. He was also able to enjoy his Make-A-Wish trip in early January of this year.
Jonathan is doing great and making wonderful progress. He is relearning to walk and is becoming so confident with gaining his independence.
He has also made wonderful improvements with his speech. He has physical and occupational therapy weekly and will soon begin speech therapy. He is enrolled in the Hospital Homebound program where a teacher comes to our home to teach him a few hours a week. I am currently working with his school on what would be the best fit for him academically.
Instagram - @jonathansjourney2020