3 month post CAR T check-up: A Quick Trip to Philly- Part Two

Read part one here.

Less than 48-hours we were back in Denver and my mom was driving us home from the airport. I checked the MyChart app to see if Beaudin’s blood/lab results had posted. When I opened the app I saw a notification for new labs. I clicked on it and saw: “CSF cell count”. It was the labs that would determine if the cancer was back in his spinal fluid. Why was it posted already? Why hadn’t I gotten a call? (At Denver, these NEVER post prior to the doctor being in touch with you.) I was only expecting his CBC.

‘Here goes nothing,’ I thought and clicked through to the results.

CSF cell count

Clarity: colorless

WBC: 2

RBC: 1

Pathologist Review Needed: Yes.

There is no concise way to bring the reader along on what these numbers mean, but any Leukemia parent knows. The spinal fluid is meant to have zero red or white blood cells. Period. It’s a closed system that is made up of only spinal fluid, no blood. Unless of course you have Leukemia, which appears as a distorted white blood cell (WBC) and can sneak into your spinal fluid, like Beau’s did in relapse.

There is one other scenario when a couple blood cells could end up in your spinal fluid sample. It is known as a “traumatic draw”. When the needle that goes into the spinal fluid hits a blood vessel along the way and contaminates, so to speak, the sample with a couple red and white blood cells.

So, when any blood cells show up in spinal fluid sample, those cells as reviewed by a pathologist. If they are normal white or red blood cells, great, yay!, traumatic draw! If they are abnormal/irregular white blood cells, then you have cancer.

Prior to relapse, Beaudin had never had a single blood cell, red or white, show-up in his spinal fluid. So naturally, when I saw that this time he had 2 WBC, I immediately starting bracing for impact. The cancer is back, I resigned. I was still unsure why Diane hadn’t called me, but what difference did it make, really?

I stared out the window for the rest of the ride. Here we were, back to square one. A short while later we arrived home. As the garage door opened, Joshua came quickly out to the car, “Babe, Diane’s on the phone, the results are clear!”

“What? I just pulled them up….” I mumbled, confused, as I hurried inside to Joshua’s office where Diane was on speakerphone.

“So, yeah, good news. His spinal fluid is clear of Leukemia. No evidence of disease.” She repeated, now to me.

“Oh…ok…Great.” I said still trying to figure out what kind of a twilight zone I was in. “So, the white blood cells, they were normal… I saw there were 2.” I said unsure if I was asking a question or making an observation.

“Yeah, probably just a traumatic draw,” she replied casually. “The pathologist review shows they were completely normal, non-leukemic. So yeah, we will wait a couple days for the MRD results and go from there. But this is a great start.”

Joshua hung-up the phone and remarked something about the “great news” and I just stared blankly at his cluttered desk. It looked like my brain felt. Unopened mail, tax documents, phone chargers, external hard drives, notes scribbled on random pieces of paper. Completely functional, and completely cluttered.

“Yeah, great news…” the words coming out as a question more than anything.

“What’s wrong?” he asked.

“I just opened the MyChart app in the car and saw the results and there was 2 WBC and I just, well, I mean I just spent the last 15 minutes fully surrendering to the fact that the cancer was back….and…and it’s not. It’s clear.”

“It’s clear.” Josh affirmed.

_____

Read part one here.