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

It’s been over two weeks since our trip to Philly. The cliff-hangar where I told you all that we were going to check and see if Beaudin’s cancer had returned and then went radio silent. We found out the results, within 48 hours actually. And I couldn’t put words to them. I couldn’t say the data without immediately back-peddling so that all of you high-hope readers didn’t get ahead of yourselves.

So that I didn’t get ahead of myself.

So that you didn’t read it and say things like, “Amazing!” “Awesome!” “Great news!” and I dealt with how to receive those messages while my stomach sat in knots.

Beaudin currently has “no evidence of disease”. His cancer is immeasurable and possible gone, though we can’t say that for certain. We can never say that for certain. But at this moment, or I guess more accurately, two and a half weeks ago in Philly, at that moment, Beaudin had no measurable disease in his body. Cancer free.

And see? There you go. Excited. Celebrating. Maybe even crying the hot tears. And that makes me panic. Because I have to jump in and explain: Wait! I know, I know, it sounds good. It IS good. But we still have to do treatment. We still have to operate like he has cancer. We still have to return to Philly for 7 more weeks.

And then you all pause and look at me, “But why?! He is cancer free!”

And that’s where I clam-up, slam my laptop shut and stop writing. Where I walk away from my computer, forget the post I have drafted, and slog through my days in a thick haze of confusion. Where I just stop answering the “How was Philly?” texts because the answer is so convoluted I can’t make sense of it.

Beaudin has no evidence of disease in his body. None. And yet, because his CarT from March did not persist (the t-cells did not stay around for >6 months) we have to assume, statistically, that the cancer will return. That somewhere, deep inside his healthy, active, bouncing off the walls, refusing to get a haircut, staying up way too late, binge reading graphic novels, 9 year-old self, there is a cancerous stem cell waiting to reawaken and take him.

Or is there? Right, well, we don’t know. Did the CarT, though not persistent, work? Maybe. Could we stop treatment all together and could Beau go on to live and happy, long life? Maybe. Do all of the doctors, western and alternative/naturopathic, recommend that we continue treatment, move forward with HuCarT, because Leukemia is a relentless S.O.B.? Yes.

At this moment Beaudin doesn’t have disease in his body. I pondered re-wording that because the test was June 28th, and it’s July 15th and if I know anything of the pitch black room that is leukemia it’s that you never have any idea what the step in front of you will hold. He didn’t have measurable cancer 17 days ago, that’s the only fact.

It’s worth celebrating really, if I let you, if I let us. Because every single moment “cancer-free” is just that, a precious moment CANCER-FREE. Our dear friends who are about 3 months ahead of us on this long road, well, there daughter was not in any way “cancer-free” at her three month check. Her cancer had rebounded, hard, and so they were launched into consecutive, high-dose chemotherapy lumbar punctures. So consistently high dosing her spinal fluid that she had a seizure. So medicated with chemo to keep her leukemia under control that she experienced Bells Palsy. The weeks that separated her first CarT from her HuCarT infusion, were treacherous. So let me be real clear, it is a GIFT that in this moment Beaudin is cancer-free.

And even still, I can’t exhale.

That’s cancer. To be both hopeful and resigned, at once. To celebrate while you brace for impact. To get news that in ANY OTHER CONTEXT would be everything, and to stare into nothing and wonder how things had ended-up this way.

Anyway, the backstory:

June 29th, leaving Philly, post month 3 check-up.

I had decided not to call and check-in on the results before our flight. The day prior, Diane, our nurse, had assured me that results would be back before our flight departed, so when I hadn’t heard from them as we were preparing to board I had all the reason in the world to call her. I also had all the reason in the world not to.

In May we had stayed around for 7 days post-testing, awaiting results only to be told that the CarT hadn’t persisted (aka Beaudin’s b-cells were making a return) and left that 15 minute meeting to board a 3.5 hour flight home. And though those results were different than these, the lesson I learned applies to both situations: Don’t seek out information that could be unsettling before boarding a flight that puts you out of touch and stuck in a seat for hours on end. 3.5 hours of forced time with your own thoughts. No thank-you.

Our trip to Philly had been quick and easy. Not easy like Sunday morning, but easy like, I suppose what forced trauma, grit, and wee bits of hope get you. An easy that feels impossible hard and stupidly easy, at once. The best worst part was the comfort I felt when we stepped off the plane, or really once we were headed to the hotel, on the road out of the airport, the Philly skyline on the horizon. That simmering feeling that you try to push away because what would it mean to admit that you actually felt a bit like you are coming home. A place that represents all the hard truths, but also feels excitingly familiar. It’s weird.

We had a late flight in to Philly so it was good and dark as we approached the skyline. The buildings were all lit up with various colors. Beau spotted the FMG Tower, where we had previously stayed, our home away from home, and asked why it was lit with the colors were that of a rainbow. Pride, I thought. But as soon as I was to answer, he spotted the hospital.

“Mom, there is my building! The Burger Center!”

I looked forward through the windshield to find it and caught eyes with the Uber driver in the rearview mirror. I gave him a faint smile and I knew he was putting together the pieces. Everyone from Philly knows the Burger Center. It’s where the kids with cancer go.

As we drove through the medical campus of University City to our hotel I asked Beau if he thought we could walk to clinic in the morning. He wasn’t so sure, and neither was I, so I resigned, “Yeah, it may take a while.”

“We can just grab an Uber, mom,” he said casually. I wondered how many of his friends knew what an Uber was. I recalled my fellow cancer mama and her writings on the daily taxi rides through NYC into Jersey for radiation treatment.

“Mom?”

“Yeah, Bub?”

“Do you think Selah is going to get Leukemia?”

I mean, really, it’s how it always happens. One minute we are talking about getting an Uber and where to stop for breakfast and the next minute he is asking about things that haunt every ounce of my being.

We have no idea. No fucking idea. Statistically, no. But you know what Beau, statistically, we shouldn’t be here. You should be cured, and we should be moved on from this. I thought to myself.

“Hmmm. I don’t think so,” I said casually because I know better. I know better than to make big promising statements like, “Of course not, sweetie.” Big promising statements like, “You won’t relapse, of course not, sweetie.”

“Ok good, because, I mean, like, I can handle it, but it’s terrible, and I just don’t think she would be able to.”

It was casual and light. The way things can often be when you talk to a child about cancer. The type of casual and light that made me wonder what the Uber driver was thinking.

Hey driver, this is my kid. He has cancer, it’s relapsed, we have no idea what is going to happen, we hope he doesn’t die, and also we really hope his little sister doesn’t get it to. Thanks for the ride!

I casually laughed, “Can you imagine Selah getting her port accessed?”

“No! She’d be like, ‘waaaaa!” he laughed as he flailed hims arms about and pretended to cry.

We drove in silence for a while as our driver found the hotel. When we got out of the car the driver helped me with our suitcases and then handed me a business card. It was simple, just his name and phone number.

“Hey, my name is Mike. If you need a ride, anytime while you are here, just text me. Don’t go through Uber- Just text me. I’ll take you wherever you need, on me.”

–

You can jump to Part Two here. Or better yet just subscribe, then the post can drop right in to your email and you don’t have to check back, like ever.