RJ A.
When RJ was 15, he started with headaches in November/December of 2019. He had just started lifting weights at school as he was trying out for the Freshman Baseball team. We thought the headaches were because weightlifting was a new thing for him and he had to get used to doing it. But when he woke up in the middle of the night with the headaches and we were getting calls from school saying he couldn’t concentrate, we knew something was wrong. RJ never complained about being sick or being in pain. We had taken him to the ER 3 times in a week with no results. Finally, we went to our family Dr. who ordered an MRI for RJ. The test was on 1/23/2020 and what this revealed was a huge mass in RJ’s brain!
The next few weeks were very emotional and trying for us. We were given so much information and had to move fast. They had done a biopsy, and he was diagnosed with non-germinomatous germ cell tumors (NGGCT) and Cancer. RJ was treated initially with a chemotherapy regimen, but his tumor unfortunately continued to grow after 2 cycles. RJ underwent surgery on 4/23/20 with the goal of removing as much of the growing tumor as possible. This 18-hour surgery was quite complex, and RJ’s post-operative course was complicated by a very prolonged recovery and significant new neurologic deficits. The tumor left him unable to see and use his eyes normally as it pressed on the optic nerve for so long. RJ has undergone eye surgeries, and eye lid lifts on both eyes, but his vision is still blurry. It has also impacted his nervous system which has left him with shaking of his arms/hands. RJ completed several weeks in an inpatient rehab facility. He made small, slow improvements at first, but his progress eventually plateaued for many months.
Over time, RJ made remarkable progress with significant improvement in mental status, strength, gross & fine motor skills, and swallowing (taking all nutrition by mouth rather than by tube) with regular PT/OT & speech services. To treat RJ’s remaining growing tumor, he went through 15 rounds of Proton Therapy and 5 rounds of stereotactic radiosurgery radiation treatments in June & July 20’. After the radiation, the team noticed another growth. It was in the right side of the brain. The tumor was pressing on the receptors for the left side of the body which in turn will mimic a stroke patient and left him unable to use his left side normally. He lost some feeling and the ability to grab and hold on with his left hand. He was unable to laugh or cry because of the tumor and location. In February of 2022 we were told that there was nothing else they could do for RJ and this tumor would eventually take him from us. So we started looking for second opinions.
I had stayed in contact with the fellow oncologist that RJ had at Cincinnati Children’s, who left and went to Nationwide Children’s in Columbus as the Oncologist. We had a few appts with them and subsequently tried another chemotherapy medication. Finally, on February 25, 2023 RJ underwent another brain tumor resection surgery. It was slotted to be 12 hours, but the surgeon had it done in 6. He removed all the tumor and the residual that was left from the first resection. He was once again left with more neuro-cognitive deficits. He is unable to do most daily tasks by himself. He needs assistance with everything which to this day he gets between an aide who helps care for him and from his Mom who also works full-time. He has completed many sessions of OT and PT and aquatics. These therapies are coming to an end as they do not have anything new to help him improve. He attends a day program 2 days a week that he loves. He has a maintenance MRI every 6 months and every 3 months sees the Oncology team for follow-ups. RJ frequently tells us that this tumor is not fair. He had plans. He knew what he wanted to do in school and wanted to play baseball. He had just made the freshman team and a new select baseball team then he was diagnosed with this tumor. His whole life stopped, just like that!! He tries to keep his sense of humor but has been very difficult for him lately. He is very strong-willed, and wants to walk again. He will challenge anyone to a chess match and Connect 4!
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Julie Caddell – 5809 Gold Dust Dr. Cincinnati, OH 45247 – 513.218.3678
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