Scott Johnson shares personal story of son's brain tumor journey
Johnson's son, Kade, recently got a clean 18-month MRI scan
JACKSONVILLE, Fla. – The story of Kade, in the words of his dad, Scott Johnson.
This past week I made a couple social media posts about my son Kade's recovery from a brain tumor. I'm glad to report that I think he’s approaching the end of this story in his life. But I realized I haven’t ever really told the beginning or middle of this story.
Let me do that here.
This journey started in late 2017 when Kade, who was 8 years old at the time, had a bad bump to the head at a swimming pool. He seemed a little bit off the next day, but like a dad, I thought he would probably just bounce back. However, moms often have a better sense about these things and that was the case in our family so we headed to the emergency room.
We met with the doctor and after talking, learned that it looked like he had a mild concussion. So it seemed like a couple weeks of taking it easy and minimal video games were in store.
However, there was one thing that did not make sense to me until after the appointment. We were waiting there for hours after first meeting with the doctor. They told us they were still waiting on the MRI results, so I just assumed it was normal hospital backlog.
Then the doctor came in and asked us to come to a different office while Kade and his sister waited in the other room. That’s when life changed. He explained why there was a delay and showed us the MRI.
On his brain was a white spot around the size of a nickel. I immediately went into a fog at that point with a thousand questions swirling through my head, I was unable to really form any of them. I knew next to nothing about brain tumors at that point and the only thing I really remember asking was, “Is this… cancer?”
Wisely, the ER doctor didn’t answer too many questions he didn’t know the answer to. He told me the on-call radiologist that night thought it might be a low-grade tumor called an astrocytoma. I later found out astrocytomas are one of the most common form of tumors in children.
Turns out this doctor said his own son had a brain tumor and perhaps that’s why he ordered the MRI. Kade had never had any medical problems prior to this so perhaps it was luck or divine providence that this doctor ordered the MRI. Hospital staff told us, if it had been any other doctor working that night they may not have.
This led to multiple follow up appointments where only so many questions could be answered because without going into the brain and doing a biopsy on the tumor they couldn’t tell us what type it really was and most importantly if it was benign or malignant. That reality didn’t sit well.
What was seen in my life publicly was a man reading the news on a set or out trying to get interviews in the community. What wasn’t seen was a dad compulsively googling “pediatric brain tumor survival rates” during commercial breaks or while sitting in the news van.
I was told that behavior was not healthy. It wasn’t. Anyway, after consulting with Dr. Philipp Aldana, a pediatric brain surgeon, we decided to take this out sooner than later. The surgery was scheduled for right before Thanksgiving.
Management at Channel 4 was more than generous in giving me whatever time I needed to be away from the office. We had to be there bright and early that November morning because Dr. Aldana thought Kade’s surgery would take around ten hours. I never saw the surgical suite but was told it resembled Star Trek as they had a real-time MRI 3-D image or something high tech like that.
I’ve dealt with feelings of hopelessness or fear in life. This was something else. We were just pushing through and letting Kade know he would go to sleep for a while and then start getting back to normal.
He was put under and whisked away to surgery as we camped out in the waiting room and prepared for a long day. The hours churned by and eventually as day turned to night we were the only family remaining.
The updates came every few hours but unfortunately, the big question was never answered. Did you get all of it out? In my weeks of research, I learned that if there was “total resection” the odds of survivability were above 90%. Maybe well above 90%.
At the 12-hour mark, they came out with an update that caused my stomach to sink. The surgery was over, they closed him up and they did another MRI. That MRI still showed the tumor. Therefore, they were opening back up and going back in.
It was around two in the morning, when I was about to doze off that Dr. Aldana walked out. I pleaded with the most important question after 16 hours, “Did you get all of it?”
With the calm of a seasoned brain surgeon, he told me it looked like they did. Relief like I had never felt sunk in. I told Dr. Aldana I was worried about him doing this so many hours. He deadpanned, “I take breaks.”
What surprised us the most was he said Kade was waking up. We walked into his room where he had a lot of tubes in him but thankfully no tumor. Let me tell you, the steroids he was on made for one cranky eight-year-old. We were just happy the outlook was good.
Follow up scans reiterated Dr. Aldana’s belief that they got the whole tumor and Kade was released on Thanksgiving Day. The recovery started quickly after a few days. The surgical meds were wearing off and Kade was starting to recover.
In the weeks to come, we found out that Kade’s tumor wasn’t an astrocytoma. In fact, it was some even more obscure tumor called a ganglioglioma. Most importantly, it was low-grade. That means his prognosis is excellent.
Kade has had some setbacks along the way with getting up to speed in school and some difficulties walking. But since last summer he’s essentially been 100%.
As far as his long-term outlook, it’s extremely good. He has to get annual MRI’s for five years. We just got the results of his 18-month MRI and it’s clear. So excited.
The support from the community through this whole journey has been overwhelming. From the well wishes and prayers from viewers to kind words from our competitors in the TV industry. When the surgery happened our friends over at Action News were giving encouragement through social media and over at First Coast News they just ran a story on Kade’s MRI last week. My family and I truly appreciate the support.
Moreover, I can’t overlook the charities that came to our aid including the “Tom Coughlin Jay Fund” as well as “Dreams Come True”. Last September Kade chose a Disney Cruise through “Dreams Come True” and that’s in fact what it was.
Sadly, along the way, we’ve also discovered we were a lucky family. Many families we’ve met through these charities and in other walks of life aren’t so fortunate with a prognosis as good as Kade’s. In fact, we have a neighbor boy right now battling a much more aggressive form of brain cancer.
Perhaps Kade’s experience would have been a lot more severe if not for that bump on the head in the swimming pool. Doctors told us his tumor grew in the “silent” portion of his brain, meaning it offered no clues that it even existed. It could have grown for years before we knew there was a problem. When I told my boss about doctors stumbling across his tumor she told me it sounded like a “God thing." I agree.
I’ve thought a lot about what to take away from this experience. Learning about the preponderance of brain tumors in children. I’ve wondered if everyone should get an MRI at some point to check out what’s in the old skull. I don’t write that as a journalist who’s investigated if that’s medically wise or even practical, just as a dad who’s thought about it.
Maybe someday I should do a news story on it. Maybe someday I will.
Copyright 2019 by WJXT News4Jax - All rights reserved.