We are back from our one-month Pacific Northwest extravaganza. It was everything we hoped it would be, probably more. But above all the hyperbole, it was truly the break we needed. It was the first time in, well, 3.5 years, when the time I spent thinking about cancer was less than the time I didn’t think about it. There were far more, “Gah, this life! The gift!” moments and far less, “Oh God, take the picture, it may be our last.” And more than anything I am just thankful that those scales are tipping.
There were moments though. Moments where I would lay in bed at night and remember that Zuza had relapsed, Chinmay too, that Emily was gone, and Maeve was at Day 100 with an ANC in decline. All families that within the last year had soaked in the beauty of a full day of living post-relapse, only the have cancer circle back around and say, “not so fast.” I would stare out the window, at the picturesque view and think, “Soak it in Betsy, because Beau could be next.”
Relapse. It’s such a bitch.
In March of 2019, shortly after diagnosis, we were driving home and Beau asked what we would do if the medicine he was getting stopped working. I was surprised by his question. We hadn’t spoken at all that the medicine even could stop working. Sure, I had heard that kids could relapse, but not Beau. Beau was so strong, handling things so well. There was no way he would relapse.
“Well, Bubba. It’s kind of like…” I tried to think of something simple, “Right now we are treating the cancer like it’s an apple, if this medicine stops working, we will treat it like it’s an orange…But Beau, you are fine. You are healthy and strong and this medicine is going to work.”
I never thought twice that Beau would relapse. Never.
Which could be why now, 12-months post his last HuCAR T therapy, 624 days since relapse, 1289 days since diagnosis, I still can’t quite get to a place where I feel completely safe. Relapse took us out in a way that diagnosis didn’t even come close to.
“I don’t need to get my labs done anymore, the cancer isn’t coming back.” Beaudin explained to me as we pulled in to the Target parking lot.
I wasn’t sure what to say. Should I affirm him, encourage his confidence? Does it matter how we speak about our ailments? I thought about the post from the other day on the parents forum, the one where the teenage boy relapsed- 18 months after his final Hu CAR T. 18 months of feeling like he didn’t need labs because everything looked great.
“I love that Beau. You are healthy and strong. We just have to keep an eye on things.” I hated that I added the last part. Does he too need to be vigilant, never at peace that cancer may still have it’s hand around our throat?
What am I to say, “You are fine. You are healthy and strong and this medicine is going to work.”?
Yesterday we had local labs for the first time since Beaudin has his port removed. It was the first time in 1,289 days that there was not a single flagged result. Every single one was beautifully normal. So normal, in fact, that I wondered if something was amiss. We have spent 3.5 years praying not to see an ANC above 2,000 and now his is a robust 5,300. Praying for a WBC below 3 and now his is above 7. Expecting a hemoglobin around 10-11 and now his is pushing 13 (12.9).
All normal. All healthy. All perfect.
I texted a cancer mom friend about the results.
“His labs are good and naturally that is making me timid.” What I wanted to say is that it made me: panicked, worried, freaked the fuck out, but I chose timid- willing myself to build a way out of this constant worry.
“OMG look at that marrow. Doing the damn thing!” She replied.
Hot tears ran immedeatly down my face. She is right. His marrow. It’s strong, and healthy, and for the first time in a long, long while, DOING THE DAMN THING.
In 2 weeks we will travel to Philadelphia for his 12-month post HuCAR T bone marrow biopsy and lumbar puncture. We will see what it looks like on the inside, for a marrow to be “doing the damn thing.”
God willing, it will be perfect.
Let it be so.