I want a word that means okay and not okay, a word that means devastated and stunned with joy. Rosemerry Wahtola Trommer
“I’m so sorry about Jimmy’s brain tumor,” the pediatrician blurted out, only then discovering that Dan didn’t yet know. The radiology tech had found him in the waiting room after Jimmy’s MRI, telling Dan only that the doctor was on the phone and wanted to speak to him.
Dan carried the news home, wanting me to be the next to know. Jimmy reclined in the passenger seat next to him, gray and miserable, his head pounding.
After settling Jimmy on the couch with Molly and turning on a cheerful sitcom, Dan came into our home office, shut the door and knelt down next to my black mesh chair. I’d stayed home to prepare to leave for a three-day strategy retreat, never once considering that the scan would reveal anything about what was causing Jimmy’s increasingly intense headaches.
“There’s a mass in Jimmy’s head. In the back. The doctor says it’s a tumor.”
No, no, no …
“That can’t be.” I turned to look out the glass doors at the kids sprawled next to each other on the couch. “That is not what this is.”
“It is what this is, honey. It’s a tumor. About the size of a golf ball. And it needs to come out.”
“He has a tumor?” The word made no sense, just like Wordnesia, that strange phenomenon when you blank on the spelling of a word you’ve known most of your life.
Not this. Not him. Not us.
“Yes, honey. We need to tell Jimmy and Molly and then take Jimmy to Emanuel Children’s Hospital. We’re meeting a pediatric neurosurgeon there, and she’s going to operate on him in the morning.”
Breathe, just breathe …
The next 24 hours rolled past like a movie about some other family, as my mind hovered outside my body watching everything unfold.
I remember getting out of my chair, leaving the office and sitting on the couch while we told the kids what was happening. Driving to the hospital after a friend picked Molly up. Sitting in the back, snuggled up close to Jimmy saying, “We are going to get this tumor out of you, and you are going to be just fine” over and over like a prayer.
We met the doctor, looked at the scans. Jimmy’s brain tumor glowing bright white on the screen. The steroids reduced the swelling quickly, leading Jimmy to proclaim he hadn’t felt this good in a long time and he wanted a pepperoni pizza for dinner.
Dan dozed in the armchair next to the hospital bed while I tried to nap in the “sleep” room, a dark square space packed with twin beds of exhausted, terrified parents. The loud snores of one and the crinkling of thin sheets on plastic mattresses making it impossible to sleep.
Breathe, just breathe …
Up at 5:00 am for a spinal MRI, then surgery at 6:30 am. The joyous news eight hours later that the surgeon had gotten all visible tumor, and Jimmy was in recovery, waking up and ready to see us.
It wasn’t until the next day, after all the adrenaline drained out of me that I realized my mind still hadn’t returned to my body. This new world we’d been thrown into felt like a foreign country, one whose language I couldn’t recognize, much less translate. Although I am a planner by nature, to consider, much less do something about what was coming felt terrifying. It didn’t help that the hospital-assigned pediatric neuro-oncologist took three days to get to us, and only then because the surgeon demanded she show up.
As I walked to the cafeteria or down the hall to the bathroom, I kept turning the situation over in my mind. The tumor was out. The surgeon even got margins. Surely there was no follow-on treatment required. I had almost convinced myself, only to have the oncologist shatter all hope with her callous, casual talk of what would happen as a result of radiation and chemotherapy. The deafness, sterility and mental retardation that would remain “once she got done with Jimmy.”
Breathe, just breathe …
As Dan and I sat in stunned silence, trying to absorb this brutal proclamation, a nurse approached the doctor.
“Joey needs more pain medication, but I can’t administer it until you’ve examined him.”
The doctor waved her off with a hand. “I’m busy. I’ll be there whenever I’m done here.”
Just like that, I stopped dissociating and starting processing what was happening. If this awful woman could dismiss another child in pain so cavalierly, she could, and would, do it to Jimmy. Six months from now, he’d be the one in agony waiting for relief while she tried to bully the terrified parents of a newly diagnosed child into letting her oversee his treatment.
This is what it is. I can’t change what’s happened, but I’ll be damned if I put my son in this woman’s hands. We will find someone else. Someone who will make protecting Jimmy from the treatment’s side effects a priority. Someone kind. Someone who will remain hopeful until there’s no reason left to be.
When we got back to the room, we found my mom and Jimmy quietly chatting. He was more alert and moving around without a bit more ease. At our entrance, Jimmy looked up and said, ” Dad, can we watch the Patriots vs. Broncos game this afternoon?”
I can do this. I can meet this moment. and do what is required of me. I can do the next hard thing and the one after that. I can find a way to say ‘yes’ to our world as it is. Even now.