for now, we aren’t running.

We went to bed on Wednesday night resting easy. The news from our last visit was slowly starting to settle. We got the initial results the day of the appointment, but the official “all-clear” came the next afternoon, once I had emailed a casual, freaking out on the inside, email to our team and asked, “Any word from Pathology?”

After an LP, w wait for two results- the CSF spin count and the pathology. We had gotten the CSF spin- zero. Normally, the pathology results within 20 minutes of the CSF spin. The fact that it hadn’t resulted 36 hours later could mean two things. 1.) the lab was backed-up 2.) the cancer was back.

Cool. Cool. Cool.

So, I did what any mom waiting for these results would do. I packed my schedule so damn full that I couldn’t see up from down and surely would not be found staring into the nothing. Grocery shopping with an extensive meal plan, check. Play date with Selah’s classmates at an indoor play gym, check, all the kids to Get Air, check. (Get Air is our local, indoor trampoline park)

By 5pm at Get Air, after hours of being, “cool, cool, cool,” I decided I would send a casual email and just check-in with the team.

Four years later and I still hope I look “cool, cool, cool,” and not “worried, freaking worried.”

Our doc replied right away, “Final review is not done.  Heme path readings are slower this week.  I called and left him a message.”

Ok. Phew, so the lab is behind.

Orrrrrrr that is a lie and they have reviewed the slide and it’s SO inconceivable that they had to call in back-up and they aren’t sure what to make of the readings and so they are pulling in various teams to make a plan.

(See? My brain is a funnnnnn place.)

A funny meme another CAR T mom posted while waiting for her son’s results this week.

At that point I just hunkered down on one of the benches at the trampoline park, a bench in the far back corner that was hidden from 75% of the park.

And then… I began to stare into the middle distance.

Six minutes later I got another email.

“He just read it.  It is negative!!  Yay!”

It is shocking how quickly I can go from panicked for my life to gaslighting myself. I read the email, sent the update to the text thread, “Beau’s Health Updates,” and then let the hot tears flow.

Ok, phew.

And then got right to it, thinking:

‘Well, duh, of course he is ok. He is actually just the same as he was 48 hours ago, it’s just that we had to poke around and make sure. He was always going to be ok. I shouldn’t have even been worried. I mean, the results yielded zero, yesterday!, how stupid that I was waiting for pathology to give the ‘all clear.’ I should have known it was all clear. Have I learned nothing? I know! I’ve worked for 4 years to regain my knowing, and I knew last week when I didn’t even want to have this test that it was clear, but then I gave myself over to other people’s knowing. And so duh, I’m crying tears that someone else gave me the news I knew all along. But… then again… I thought I knew at the beginning. I really thought I knew. And I didn’t know and it almost killed him. Thank GOD the team told us, Thank GOD he is clear. So many kids aren’t clear. I can’t believe he isn’t dead. I’ll never know again. I am so tired, I shouldn’t be. I should have known he was fine.”

My best friend, who lives in Australia and is on the health updates text thread, replied privately to me “I am just casually crying at the park.”

I wrote back, “Me too. Casual tears at the trampoline place.”

But really, there is nothing casual about pediatric cancer. Nothing casual about watching your child be put under sedation. Nothing casual about waiting to hear if their spinal fluid is free of disease.

It feels like a bit of a finish line now. God knows anything can happen. I am in too many ‘parents of cancer kids’ Facebook groups to be naive. Yesterday, a boy who was 30 months off-CAR T treatment relapsed in his brain.


It’s never fully over.

But this marathon. This 4 years of blood, sweat, and tears, is complete.

A friend asked if we felt like we could finally exhale with these results. I told her it was kind of like finishing a marathon. You feel thankful it’s over, amazed you actually completed it, but also really, really tired.

Your body slowly comes to realize it can stop running.

We don’t know if there will be another marathon.

We don’t know if this is retirement or merely the off-season.

But for now, we aren’t running.

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