August 24, 2006
Dr. Anna Janss: “Your son has what I like to call a lump in the head.”
Jim and Emily: “What is that? A tumor?”
Dr Janss: “Yes. We are admitting him to the PICU and scheduling him for emergency surgery tomorrow.”
Just like that. We became parents of a pediatric cancer patient. Although, we wouldn’t have that diagnosis for a little over 24 hours. And it would take a few days to hear the exact type of malignancy we were dealing with.
It’s weird to think that in 2006 there weren’t a ton of options for a 2-year-old with a brain tumor. Surgery, of course. They didn’t think chemo was the way to go, but radiation had not really been done on a child as young as Bo. We consented to being part of a study. They were trying targeted radiation. This means they wouldn’t radiate his entire toddler brain, just the offensive spot. Before that could even start, the stupid thing started to come back.
Another surgery (October 10, 2006), two weeks to recover, and then 33 rounds of radiation began. Whew. It was hard, y’all. But effective. December 13, 2006, was his last treatment, and he has had clear/stable scans since.
Symptoms to diagnosis to treatment to beginning maintenance was a whirlwind. It was only five months. Bo’s symptoms were hard to spot because in typical Bo fashion, he didn’t present like many other people would. He had been extremely hard to handle all that summer. He refused to take a nap and pitched an ever-loving fit at bedtime, but that was one hundred percent normal for him. I collapsed exhausted at the end of every day. Of course, now it’s easy to see that he just felt really bad. And yes, I have mom guilt about that.
August 12, 2006, was the first time I noticed the seizures, but I didn’t know it was a seizure. It was a Saturday at Monkey Joe’s, an indoor inflatable slide/bounce house playground, for a birthday party. Bo was riding a fire truck, you know the ones you put a quarter in and it goes up and down for a minute, with a friend, and the right side of his face started twitching. It freaked me out a bit, but he was completely fine thirty seconds later. Over the next few days, it kept happening, and I kind of thought it could be allergies because his other eye had done the same thing in the spring. I called the doctor, and when he checked him out, he said we should just watch it. The twitching started to happen more frequently, and Bo was scheduled for an EEG.
One morning as I was getting Jake in his car seat, Bo came to the front door and said, “Mama.” When I looked back at him, his face was twitching, and he then dropped the eggo waffle he was holding in his right hand. And that was when I got scared. I thought he might be having a stroke, but he was completely aware of everything going on. I held him, felt for a fever, looked in his little face, and took him to St. Thomas Day School. I called the doctor when I got home, and it was decided that we should skip the EEG and go straight to an MRI. This was not as easy as it sounded. That was not an easy ask in Columbus, GA, in 2006. Children under a certain age have to be sedated for scans. I can barely make it through an MRI without moving. I wish they would sedate me. I digress. There was only one anesthesiologist in town that sedated children and he was on vacation. For weeks. I had been talking to our pediatrician’s scheduler and she finally told me that if I had any connections anywhere else, now was the time to use them. Luckily, we did.
My mom was able to call a friend and at 7:30 the next morning I got a phone call from a precious individual in the office of the CEO of Egleston Children’s Hospital in Atlanta. She asked how soon we could get there and Bo was scheduled for an MRI at 1 and an appointment with a neurologist at 4. We got dressed and got in the car. We kept getting bumped while waiting for his turn and missed his appointment with the doctor. Finally at like four they started to get him ready. We were already not having fun as he couldn’t eat anything because of the sedation and we had gone 3 hours past his appointment time. Bo was…cranky. And you know the rest. Research saved Bo’s life. The field has come a long way in nearly 17 years.
That’s why awareness months exist. They hope to draw attention to things that you need to know about and to ask for help in funding life saving things. We are lucky. We have the absolute luxury of sharing Bo’s story with a happy ending. Only six weeks of treatment for Bo and we were able to find an executive apartment to rent (Ronald McDonald in Atlanta was full then and probably full now) with the help of our families and go home on the weekends.
We have a friend that is in the midst of treatment. I would love it if we could love on Ezra and his family. You cannot imagine what it means to a family that is in the trenches of pediatric cancer treatments when someone says hey, let me buy you a cup of coffee. Or a sandwich. Or a tank of gas. In honor of Ezra, would you give to his family? You can sent your support to Ezra’s family through @TeamEzra on Venmo.