HuCART: Month 6 results Part 2

Catch up on Part 1 here.

Jude didn’t want to be alone while he was in and out of throwing up. He was scared. Joshua and I took turns laying with him and assuring him he was going to be ok. At one point, laying on the bathroom floor he kept asking a lot of specific questions about being sick and I assured him, “You’re ok ,bubba. This is normal.”

He replied, “But what if I am not ok. Because sometimes kids aren’t ok, mom. What if this is cancer?”

“Oh bubba… this isn’t cancer.” I curled up next to him our heads narrowly avoiding the toilet. “This is totally normal. Everyone gets the flu. Everyone throws up. I promise your body is doing exactly what it needs to do to be healthy.”

He didn’t believe me and remained anxious over it, asking each time I took him temp, “But is that ok?” Sweet Jude, it’s hard to know which came first: the cancer, or the anxiety. It doesn’t surface often, but when it does it’s a painful reminder of how hard this is on all of us. Jude was Selah’s age (4) when Beau was diagnosed and I think often, while parenting Selah now, how hard it must have been for him to make sense of things. We didn’t do it perfectly, supporting him through his brothers cancer diagnosis- everyone was in survival mode. And sure we have come a long way since, but on occasion the reality surfaces that even if we don’t realize it, we are all worried about many things.

We stayed close to our Jude Man and helped him through the long night that is the stomach flu. By Wednesday all the throwing-up had subsided and we were just nursing the fall out of dehydration: terrible headache and body aches.

Wednesday we laid low, hoping he would recover, and no one else would fall victim. Around midday the MyChart notification came through and I did the frantic *click* click *click* through to Beau’s preliminary bone marrow results.

CBC MANUAL DIFF BONE MARROW. Everything looked straight forward until the bottom line:

BM Hematopoietic/Undifferentiated Blasts

3.0 %

Blasts. Shit.

I looked up what hematopoietic meant. What undifferentiated blast could be. I couldn’t find anything definitive.

Was this it? Was this the results that told me that the disease had spread to his marrow? I moved through the house in a daze. Within an hour the next results pinged: BONE MARROW EXAM – Details

Microscopic Description

Peripheral blood smear (1 Wright’s) shows normochromic normocytic red blood cell population. Leukopenia is present with absolute lymphocytopenia. Platelet count is normal. Circulating blasts are not present. Bone marrow aspirate smears (3 Wright’s) and biopsy (3 H&E) shows sparse spicules and 60% cellularity. Trilineage hematopoiesis is present and shows a full range of maturation. Myeloid lineage shows a slight left shift and is relatively hyperplastic and morphologically unremarkable. Erythroid lineage is left-shifted and shows unremarkable morphology. M:E ratio is 6.53:1. Megakaryocytes are adequate and show normal morphology. Lymphocytes are slightly increased (29%) and show small, mature appearance. Rare immature cells (3%) are present. Some of them show hematogone features and others show myeloid features.

I started frantically searching again: normochromic, normocytic, Megakaryocytes, Trilineage hematopoiesis, Erythroid lineage, left shift, sparse spicules. What did all of this mean.

I texted a cancer friend, “Read this. They say unremarkable twice. That has to mean something.”

She wasn’t confidant in her reply. We’ve both seen too much to assume unknown results are a good thing.

I emailed our team and asked them to call me to review the results. I kept it casual, “Hey, call me about results,” when what I meant was, “Please call me because I am freaking out because there are blasts and why the hell are their blasts and what the crap does it mean that the Erythroid lineage has a left shift. And what are rare immature cells? and could this be from the CAR T, or is this from the chemo, or is this cancer……”

Our oncologist called me the moment she saw the email which put us in the precarious position that she was reviewing the results, for the first time, live on the call with me.

“ok, well…. I am not concerned…The immature cells could be from marrow suppression…”

“Right, I mean he had lymphodepleting chemo less than 2 months ago,” I interjected with false confidence.

“Yes….”

“And could it be CAR T, because I know CHOP said the cells may look different and so I just thought maybe its that, like maybe it’s from that…”

“Yes…”

We sat in silence. I swirled and she read the fine print.

“Ok, listen. I am not concerned. We need to just wait to see what Seattle says about the MRD and we will go from there. Usually those results are back within 72 hours… so Friday.”

We hung-up and I realized we were here again, in the heavy wait.

–

I was eager to hear the updates, but surprised with myself at how fully I was functioning in the meantime. Sometimes this wait can take me out, but this time I felt a bit more at peace in the waiting. I’ve gotten stronger living unsure of things I suppose. Friday morning I was outside playing beam-o with Jude and I thought to myself, “Regardless the results, Beau is healthy and strong and we can manage a transplant if we must.”

I promised myself that I would not email the team until Friday at 4pm to check-in on the results, but by 12noon I had convinced myself I needed to just email them asap because what if they got off early for the weekend…(this is funny logic bc oncologists don’t get off early.)

I knew everything was in our favor: Beau hasn’t had marrow disease in his relapse, his CSF was clear, other parents in the CAR T support groups said they had also had “Undifferentiated Blasts” that proved to be nothing.

Everything was in our favor and yet…I’ve seen too much to breath deeply on a “most likely.”

–

Our oncologist called us Friday at 2pm, “It’s clear, MRD is clear.” The conversation was short and to the point. I hung-up the phone, texted my people and then immediately wondered if I had imagined the whole thing.

I sat down on the floor, as one does when the results call comes in, and found myself supine. “Results are clear! Beau, your marrow is clear!” I yelled, relieved, down to Joshua and Beau in the living room. I heard them remark excitedly to each other and I exhaled for the first time in what felt like ages. It was all too much. The waiting, the wondering, the knowing. This is the heavy wait.

My body released all it had been holding, most unknowingly, and I laid on the floor and stared at the ceiling as tears fell down my face. Selah came over and plopped on top of me and asked why I was sad.

“I am not sad, Sis. I am actually really, really, happy.”

She looked at me with great confusion, laid down on me, her head to my heart and replied, “Me too, mama, I am really, really, sad happy, too.”