Chapter One, The beginning

February 23, 2012 8:31pm (Facebook post)

"I can see things in my imagination. Want to watch me?"
"Sure Sam."
"Ok, watch."
*sits totally still for about 10 seconds, staring into space*
"Did you see me imagining, Mom?"


Chapter one

March 30, 2014

Two years ago today my only child, Sam, was diagnosed with a brain tumor. He’d been having issues with his vision, headaches, unexplained vomiting… he was clearly ill and getting worse. We had gone to see Dr. Debbie, Sam’s pediatrician, on a Wednesday and she had ordered an MRI. Early Friday morning, before showers or breakfast, we went to my hospital (where I work as a nurse), so that he could be sedated to have his images taken. A couple of my coworkers had agreed to do his imaging and manage his sedation. This was a big favor to ask, especially of the anesthesiologist, as we didn’t routinely take pediatric cases at the time… but I wanted people I knew and trusted taking care of my boy.


“Papi”, my stepdad and Sam’s favorite guy, came with us. Sam was silly, playing with a barf bag like it was a hat. I tried to be silly with him, but was scared… not so much of the results we were to receive (I was in pretty strong denial that this was going to be a serious issue), but because I know how wrong things can occasionally go with anesthesia, despite the skill of the practitioners, and was scared of that.

I don’t remember what we did while Sam was actually in MRI. Probably got coffee and food, but I am not sure. I do remember him arriving back to the Short Stay Unit, still sedated, but recovering just fine from the meds. I also remember that my doctor friend who had managed the sedation couldn’t look at me. I didn’t think much of it at the time, as I was so concentrated on Sam, but later, after the phone call came telling me what the results were, I remembered and felt a deep grief for my friend… that he knew and couldn’t tell me. I know what it feels like to know that there is something terrible inside someone and not be able to tell them; there are rules about who can disclose results to patients. As a nurse, there have been many times I have known horrible things about people and have had to pretend I didn’t while waiting for the right doctor to come in and tell them about it. It’s a terrible feeling having to do that to an adult stranger, I can only imagine how devastating it must have been to have to do that with the patient in question being a child, and the child of a friend at that.

The phone call came about ten minutes after Sam returned to the room. When my cell phone rang that soon after imaging was done, I knew with absolute clarity that something terrible was happening. Dr. Debbie was out of the office that day, she had told me that a partner of hers, Dr. Jimmy, would call me with results. Usually results take hours or sometimes even days… first the images are taken, then the radiologist reads the images and dictates a report, then someone transcribes the report, which then gets sent to the doctor’s office, then someone at the doctor’s office reads the report and gets back to the patient. The speed at which results came to us meant that the imaging tech (a guy named Jim who ran the MRI machine that day), had called the radiologist who had, in turn, called Dr. Jimmy. No reports, no dictation, no waiting. That only happens when shit is really, really bad.

I answered the phone.

Dr. Jimmy asked me if I could come to his office across town.

I said, “Just tell me.”

“It’s hard to give results like this over the phone.”

“It’s going to be just as hard in the office, isn’t it? I don’t think I can wait.”

“Yes. I suppose you’re right.” He paused. “He has a golf ball sized tumor in his fourth ventricle. At the base of his brain, in the back, next to his brainstem. They’re waiting for you at the children's hospital, up in Portland. The neurosurgery team is expecting you.”

Sam wasn’t all the way awake. I told Papi, I think. I went out into the nurses’ station. Two of the nurses who I worked most closely with, Glenda and Eva, were there. I told them about his tumor (though I bet they already knew as our team worked out of the Diagnostic Imaging department and were privy to such information) and I remember telling them, with a weird sort of laugh, that I didn’t think I’d be at work the following Tuesday. I called my mom and asked her to meet us in Portland.

I have spotty memories of the rest of the day. We came back to the house. Sam was jumping on the furniture. This was something he usually got in trouble for and I remember almost telling him to stop, but thinking, as he vaulted over the back of his purple plastic chair, it might be the last time he’d be able to jump and I let him run around the house like a wild man. I gave him yogurt. I packed some clothes. I sent a courtesy text to Sam’s absentee father, knowing he’d find out about it on Facebook otherwise. We got in the car. It was raining and Papi asked if I wanted him to drive. I said I needed something to do. I remember almost none of the two hour drive to Portland.

When we got to the hospital, my mom and Jordan (Sam’s dad) were both there. By about 5 pm, we’d met with the on call neurosurgeon and they’d taken Sam to surgery to place an EVD (extraventricular drain) to relieve some of the pressure that was building up inside his head. He came back from surgery with an orange rubber tube sticking out of his head, a steady drip of clear, golden cerebrospinal fluid draining into a hard plastic collection container at the head of his bed. Sam, even after having a hole drilled in his skull, was more comfortable than he’d been in weeks. Maybe longer.

He watched Thomas the Tank Engine, singing along with the theme song.

My Facebook posts from that day:

March 30, 2012

7:19pm
For those of you who don't already know, Sam was diagnosed today with a brain tumor. We are in Portland at the children's hospital. He is in OR now having a drain placed to alleviate some of the pressure inside his head, as the tumor has mostly blocked the drainage flow of cerebrospinal fluid. He will have surgery to remove the tumor on Tuesday, unless something necessitates it happening sooner. Thanks, everyone who is thinking of us. Sam and I have family with us. I will keep you all posted as I am able on here. Think good thoughts for us. Pray, send us love, healing energy... whatever your preference, all are appreciated.

10:46pm
Drain placement was uneventful. He's more comfortable than he's been in a week and watching a movie with his dad while I take 5 minutes out of the room. All in all, the best possible start to this crazy, scary road. Thanks to all of you who are here in spirit, we're feeling the love something fierce.

11:19pm
Meet the night shift pediatric neurologist, Dr. P. Awesome with Sam, energetic, funny (in a good way). Testing his vision from the foot of the bed, she asks, "Can you see me?" Sam says, "You look pretty good to me." Made her night.


Continued in Chapter Two…..