Trigger warning: pediatric cancer
I think it is human nature to rationalize reasons why bad things happen to other people. It makes us feel safe, protected almost, that this thing could never happen to us. Well, on Saturday July 21, 2018, my rationalizations ran out. I’ve learned a lot since that day. I’ve learned that when your biggest nightmare becomes a reality, you do move on. It’s not pretty, it’s not easy, and sometimes you can’t breathe (lots of times), but you move forward.
You see, on July 21, my life was forever changed when my two-year-old baby was diagnosed out of the blue with a brain tumor. He had surgery two days later, and we are still inpatient with multiple complications. My baby has since started chemo and my four-year-old has since started pre-K.
My life is a blur. I am a mother living her worst nightmare, a mother putting on a happy face for my heathy child as he starts a new school, and a mother trying to navigate the impossible with my husband. I find myself asking “What the hell did I complain about before?” I would give anything to go back to the days when a family stomach bug and a toddler temper tantrum were my low points. I would do anything to go back to a hectic morning getting the boys off to preschool before starting a twelve hour shift. My life changed in a moment.
I’ve also learned of the resilience of my son, my precious boy. My baby. Who doesn’t have the sense to ask “Why me?” Who smiles at me and grabs at my face even though I don’t know if he’s seeing it. Who still calls for me and loves me after I’ve had to hold him down yet again for something awful whispering in his ear, “It’s ok. It’ll be over soon. Mama loves you so much.” He has no comprehension that what I’m doing is necessary, yet he loves me anyway.
I’ve learned that I married a rock star who is the saving force helping me to get out of bed every morning. Because our family, this family we’ve created, is worth fighting for.
But the most surprising thing I’ve learned is of a community. An amazing community that none of its members wanted to be part of, but somehow they come together and are strong.
Know this: the parents of kids with cancer were the same as you the day before their child’s diagnosis.
It’s only one moment that separates you from them — not a big difference. So I go back to the worst night of my life, the moment where my “cancer only happens to other people’s children” bubble burst.
It’s not her fault, but I’ll always hate her. I will always hate the ER doctor who looked at me so solemnly when I told her my son’s symptoms. When I told her, in passing, that over the last five days he mentioned that the back of his head was “bothering me” twice. A kiss made it better and sent him running to wrestle with his brother. The second time he said it and pointed to the exact same spot, my radar went up. I told my husband to tell me if he mentioned it ever again. He didn’t.
As a nurse, I mentioned it to my colleagues at work. No, no fever. Eating fine. Maybe a little difficult, but he is 2 and a half. I had him put his chin to his chest with no pain. What would I even say if I brought him to the doctor? He just moved into a big boy bed, maybe his neck is stiff. “Just watch it” was the consensus, and I did. Nothing out of the ordinary — not at home or reported from the summer camp he attended every day — and they call for something as minor as a splinter.
Then one night my husband called me frantically, asking “Where are you?” I was 2 minutes away.
“Good,” he said. “Get into the kitchen immediately as soon as you get home.” The line went dead.
I sped up the road thinking there was a break-in or something worse. It was my son.
“He started complaining of his head on the drive home then started vomiting.” My husband handed his exhausted little body to me and he nuzzled into my shoulder. Should we go to the hospital?
My son had just been at a party and was exhausted and had a tendency to get car sick. So we didn’t. We took him to the pediatrician in the morning and even there he was observed and sent home under the premise that we would watch him closely and call in an hour to give an update.
So when the ER doctor said, “Two-year-olds don’t complain of headaches,” I knew.
“Did you notice his heart rate was 67 when you came in?”
Shit — what is normal heart rate for a two-year-old? I don’t remember, but that seems low. I’m an adult nurse; I don’t know the normal pediatric vitals. Shit. Shit. Shit.
“I’m putting him in for stat imaging. I’d prefer a quick MRI but if it takes too long to coordinate I need to send him for a CT. We just need to see gross images right now.”
They just need to rule out the impossible, rule out the catastrophic so we can just be sent home with Motrin and a probable stomach bug.
“Oh, and I am putting the order in as life-threatening just in case you saw it. Don’t worry, it’s not, but we need these images quickly.”
After I laid in the MRI tube with my son for the 10 minutes of imaging, I looked hopefully to the fellow who had accompanied us to radiology with the nurse while my son was on monitors. “How did it look?” I asked, ignoring the extra company and machinery for a quick test. It’s a top-notch hospital, they do everything over the top.
“I didn’t really get a look at it. The doctor will come in to discuss when it is read.”
We were back in the Emergency Department room for less than five minutes when the doctor I’ll forever hate opened the door. This is much too quick. She was moving toward me, but didn’t seem to be getting any closer.
“Well, it isn’t…” It’s a clean scan. Well, what the hell is it? Do I just have a kid who is going to complain of headaches?
Then she was there, right in front of me, and my mind started to process her whole sentence. “Well, it isn’t good news. I’m just going to cut to it. There is a mass, a very large mass, in your son’s brain.”
Period. End of sentence.
This doctor could be the most genuine, kindest person in the world, but I hated her.