Joseph had experienced nausea, dizziness, double vision and sinus pressure for roughly 7 days prior. After over the counter sinus meds did not help, Christina took Joseph to his pediatrician & eye doctor whom directed us to MUSC Children’s Hospital.
After a “quick MRI”, Joseph was admitted with a golf ball sized brain tumor, and a temporary shunt was inserted into his head to relieve the brain pressure causing those above issues, the shunt helped greatly / MUSC Shawn Jenkins Children’s Hospital Pediatric Intensive Care Unit (PICU).
Joseph had a sedated multi hour MRI to understand the full scope and size of the tumor. This was also to create a map & game plan for its removal.
Joseph rested in preparation for the brain surgery to remove the tumor the next day.
Christina and I kissed and hugged our beautiful son, and left him in the amazing neuro team and Gods hands for a 7 hour surgery. That evening our son returned with the amazing report of a very successfully procedure where the neuro team was able to completely remove the golf ball size tumor.
Joseph improved each day post surgery, eating more, and doing PT and OT in the room. Plus, he had awesome visit’s from his new friend Baskin a white lab whom came to lay in bed with Joseph.
Joseph was discharged from MUSC.
Joseph started and participated in outpatient PT and OT.
His care team presented the most likely next course of treatment would be the https://www.floridaproton.org/cancers-treated/pediatric-cancer/brain-tumors
His tumor has been identified as Medulloblastoma
Tom Dennard worked to help secure housing for our family in JAX FL for the 6 weeks of anticipated treatments.
Joseph had his “port” placed for future sedation and chemo. He then had a lumbar puncture so the spinal fluid could be analyzed for additional information to aid in the treatment plan.
That night, the care team presented the lumbar results. They shared a more aggressive path was needed to cure Joseph and a clinical study/ trial called “Head Start 4” would be a better option to seriously consider. This path goes as follows:
- 3 rounds of aggressive chemo @ MUSC (In Charleston)
- Then the study tracks the option of ONE more round or THREE more rounds of Chemo
- Then Stem Cell Study
- Finally concluding with Proton Radiation (In JAX) at the end instead of the beginning as previously presented
Joseph completed round two of chemotherapy.
Joseph completed round three of chemotherapy.
Joseph at home resting the month of March
Joseph was assigned 3 more round of chemo with 3 transplants per the Head Start 4 study
Bone Marrow harvest in late April only produced enough product for 1 transplant. Due to the product quantity for transplant, the parents and doctor team decided to leave the Head Start 4 study, BUT use it as a road map and assume he could have been randomized to 1 round.
Joseph started round 4 of chemo in May.
May 10 – Joseph had successful bone marrow transplant
May through June of 20201 Joseph recuperated inpatient at MUSC Children’s Hospital
07/11 - 09/03
Proton Therapy in Jacksonville FL. Joseph successfully completed 6 weeks of Proton Radiation Treatment on Sept. 3rd.
Sept 12, 2020 was Joseph’s original diagnosis date and as of Sept 13, 2021 Pediatric Medulloblastoma is officially in remission after a year of treatment!
First post treatment MRI. Fingers crossed for continued No Evidence of Disease (NED).
Super Joe will have scans every 6 weeks for the first year to monitor his progress of healthy cancer free living 🙂
How You Can Support
Option 1: Donate Online
- Step 1 , go to https://givenow.musckids.org
- Step 2, Select Amount
- Step 3, Select Joseph’s Sidekicks in drop down menu
- Step 4, complete the remainder of the form fill
Option 2: Mail a Check
MUSC Children’s Hospital Fund
18 Bee Street
Charleston, SC 29425
Please put Joseph’s Sidekicks in Memo Line