He might be a little quiet at first, but give Johnny Adamson a good dad joke and he’ll start warming up – and he will gladly throw out a few of his personal favorites:
“What dinosaur can jump higher than a house? Any kind – a house can’t jump.”
“What did one wall say to the other? ‘Meet ya at the corner.’”
“What is gravity’s favorite season? Fall!”
Johnny, who turns nine next month, is a third grader at Daniel Island School. He moved to the area with his mom, Caroline, last year.
Upon meeting him, one would see a bright-eyed young man with an infectious chuckle and a penchant for making others laugh. His signature "move" is giving a thumbs up whenever he approves of something.
It would likely come as a shock to learn the hardships he has endured in his short nine years of life: Johnny is the survivor of a cancerous brain tumor, a condition that took years to determine – and subsequently wreaked havoc on his and his mom’s lives for quite some time.
However, this dynamic duo is a leading example of faith and resilience, and because of their experience, they know firsthand why it is important to shed a light on childhood cancer.
With September being Childhood Cancer Awareness Month, the Adamsons are sharing their story to do their part in advocating for pediatric cancer research – while maybe providing some hope for the families who are still in the trenches.
A tricky diagnosis
Caroline and Johnny’s story begins in Chicago.
Johnny was 3 years old when he started having bad meltdowns – specifically severe ones, with lots of crying and kicking, that would last all day, much to the concern of his mom.
The impacts of Johnny’s ongoing behavior issues at school took a toll on Caroline, a single mom with a background in marketing, who would regularly get called away from work to pick him up from school because of the meltdowns. He saw occupational and behavioral therapists in attempts to help him. The ongoing issues resulted in him attending four schools in a three-year span.
“It was just really tough,” she said.
In 2019, when Johnny was around 3 and half years old, he came home from preschool complaining that he fell and hit his head against the corner of a table, and that his head still hurt – he particularly pointed to his left temple, Caroline said. When Johnny was still complaining about it the next day, Caroline took him to the emergency room.
That ER visit ended up lasting seven hours, with staff considering the issue to perhaps be a brain bleed or a cyst. The Adamsons were eventually recommended to go Lurie Children’s Hospital for further scans.
“It was all really, really hard for Johnny at that time because he didn’t know what was going on,” Caroline said.
For nearly three years, the family was constantly coming and going from the doctor with little insight as to what was going on with Johnny. The “lesion” got measured every six months or so. In 2022, they finally learned that Johnny actually had a brain tumor.
With this information, Caroline got in touch with a non-profit called the American Brain Tumor Association and received a lot of support and resources, including a mentor who connected Caroline with one of the top neurosurgeons in the United States: Dr. Jeffrey R. Leonard, chief of neurosurgery at Nationwide Children’s Hospital in Columbus, Ohio.
The first thing Dr. Leonard ordered was for Johnny to receive an electroencephalogram – also known as an EEG – to measure the electrical activity of the brain. What nobody knew yet was that Johnny’s “meltdowns” were actually frontal lobe seizures, a form of epilepsy that can produce unusual symptoms that could even be mistaken for mental illness. Conditions, including tumors, can cause frontal lobe seizures.
Johnny just happened to have one of these seizures during the EEG scan.
“Then we finally determined that the emotional stuff was all from the seizures,” Caroline said.
The tumor was located in Johnny’s left parietal lobe. For the first six months of being under Nationwide Children Hospital’s care, Dr. Leonard was initially doubtful his team could operate on the tumor right away because of where it was located and its shape; Caroline said part of the tumor was like a mass but the other part had “tentacles” wrapped around the area of the brain that controls speech, which created a number of concerns.
Caroline said it could have been as bad as Johnny regressing to infantile state and having to re-learn everything if the surgery went poorly.
Dr. Leonard had Johnny do a functional MRI, a non-invasive brain scan that measures brain activity by tracking blood flow. He came back to Caroline with a new plan in place about going through with surgery.
The medical team assessed that right around age 12 would be when the tumor could become life-threatening, so Caroline was faced with a decision: wait until Johnny was closer to 12 to do the surgery, or go ahead and do it.
At this point in time, Johnny was a first grader, with his mom receiving a bulk of his schoolwork from his teachers to pass on to him from his bedside in the hospital. Doctors warned Caroline that Johnny may be a totally different person coming out of surgery, with no memory of anything Caroline taught him, but Caroline stayed optimistic, and particularly took into account his age; neuroplasticity is more pronounced in younger children than older, so the hope was doing the surgery sooner, as opposed to when he turned 12, would be more beneficial in terms of Johnny being able to bounce back quicker.
“I prayed and prayed and prayed, and I made the decision that we were going to go forward with it,” she said.
Booking surgery can take a long time, but in late January 2023 the Adamsons were informed of a slot that opened up just took weeks out on Valentine’s Day. They accepted.
The surgery lasted about seven hours, and his medical team successfully removed most of the. A biopsy returned with fairly good news: Johnny had ganglioglioma, which translates into low-grade cancer. It is very rare and contains properties of both glial cells – responsible for providing the structural support of the central nervous system – and neuronal cells, which are the functioning component of the central nervous system. It is more commonly found in children and young adults.
Johnny is now the closest to cancer-free as he can possibly be. The Adamsons still visit Columbus once a year to monitor what remains of the tumor.
“Dr. Leonard got enough of it out – but not so much that it caused brain damage,” Caroline said. “He was an amazing surgeon. What he achieved was incredible – most brain surgeons would not even do that type of a surgery so we were really fortunate.
“Nationwide Children’s Hospital treated us like gold,” Caroline added.
Her prediction on Johnny’s rebound had been spot on; Johnny had a lengthy recovery time in the hospital but he made excellent progress and regained his strength.
Two weeks after that surgery, Johnny took the iReady test – he passed into second grade.
A fresh start
For so long, people who knew Johnny just thought he had behavioral issues. Caroline urges others to remember to have compassion and be patient when it comes to such situations involving a child.
“You never know what someone is going through,” she said, adding, “Especially kids with cancer – they could be suffering on the inside and you would never know it on the outside.”
Today Johnny still has some mild aphasia, where he might experience some difficulty processing what someone is saying to him. He continues to take medicine for his seizures – and he has not had a single episode since the surgery.
“The huge success story is that he made it through his surgery miraculously,” Caroline said. “He could not have done better. He has done so, so great.”
Between the constant commuting to and from Chicago and Columbus, the Adamsons would enjoy some rejuvenation in South Carolina by visiting Caroline’s parents’ timeshare in Myrtle Beach. Caroline previously attended the College of Charleston, so around the time of Johnny’s surgery, she was already eyeballing the move to Charleston for a fresh start.
The duo has thrived since making the move. Johnny has dabbled in baseball, swimming and basketball. He had an awesome second grade year at Daniel Island School, working under the direction of second grade teachers Katie Gryder and Elizabeth Dennis.
Caroline said she and Johnny love the school environment.
“They’re just so caring – I can’t say enough about them,” Caroline said. “They are personally and emotionally invested in helping him thrive.”
Johnny said he likes his new third grade teacher, Grace Evans.
“She actually tutored me before (starting) second grade,” Johnny said.
Johnny is a very high-tech child and is very into computers and video games (particularly “Fortnight”). Potential future career endeavors include being a professional video gamer or a physicist. His favorite subject in school is math, though he has also greatly improved in his reading comprehension.
Johnny is not too chatty about what he remembers from battling the tumor – other than being a hospital patient is a drag.
“You’re in the hospital for 50 percent of the time,” he said. “There is a lot of terrible-tasting medicines.”
However, Johnny is very resilient and has kept a brave face through the whole ordeal.
“It doesn’t really scare me,” he said.
The Adamsons have gotten involved in local nonprofits advocating for children with cancer; Johnny attended Camp Happy Days over the summer, an action-packed weeklong overnight camp for children with cancer and their siblings.
They are also very active with Courageous Kidz, led by Debby Stephenson (though anyone who really knows Stephenson would refer to her as “Flash”).
“Groups like Courageous Kidz are so incredibly important, and same with the American Brain Tumor Association – if I had not been linked to them, I don’t know if I would have made it through,” Caroline said, adding that in the case of Courageous Kidz, Flash gets to know the families she works with to help them get what they need – maybe it is a gas card, or groceries, or a babysitter to help watch the siblings of the child fighting cancer so the parents can be at the hospital.
“Little things like that…it’s so personalized, and it’s so important the way Flash gets to know the families and can get them exactly what they need,” she said, adding, “The local (organizations) are so important.”
While a nightmarish experience for any family, the Adamsons have come out stronger, and still cling to hope that one day there will be a cure for cancer.
“We feel so blessed and lucky that we are on the other side of the hard times,” Caroline said.
