It has been over 500 days since the last time there was measurable cancer in Beaudin’s body. So why doesn’t it feel like butterflies and rainbows to say that he remains cancer free? Trauma, that’s why.
Last week I was checking out at Whole Foods when I saw the Philly area-code pop onto my screen. I apologized to the clerk, told her this was urgent and quickly answered.
“Hi. The initial pathology of bone marrow is clear, so spinal fluid and bone marrow are clear,” our nurse said quickly, “We will wait until next week for MRD.”
The words caught in my throat as a I fumbled through some sort of “thank-you” before hanging up. Tears streaming down my face. I walked to the car and all I could think was, “Holy shit, we may actually get out of this alive.”
500 days since hearing bad news and I am still utterly shocked that we may survive this.
So, 505 days since his first CAR T, 358 days since his HuCAR T the results are:
No leukemia in his spinal fluid.
No leukemia in his bone marrow.
The other day Beau went to the dentist and had a cavity filled with no pomp and circumstance. He just went in, took the deep breaths, let the drill, drill, and that was it. No weeping, no talking him out of panic, no medical trauma. Just a cavity filled.
I sat in the lobby and took my own deep breath and thought, “We may be healing…”
The boys have taken to listening to music on our living room tv. Yesterday Jude had wandered off, leaving Beau alone with the music. I caught a glimpse of him dancing. Akin to the “dance like no one is watching,” cliche. I stared while he moved his body, unaware.
Some days I think we may be healing, other days I am sure of it.
This week we finalized two trips for September that I can’t wait to tell you all more about. The first is Beaudin and Joshua headed to Sweet Emily’s house in Mississippi to attend the annual Dove Hunt. Beau is so eager to go, and I am hopeful that his being there will bring a small slice of healing to their community.
Then a few weeks later, Beaudin was invited to attend the Believe Ball, a fundraiser put on by the Emily Whitehead Foundation (EWF). The EWF is the reason Beaudin was able to get CAR T treatment. We are so thankful to them, and eager to attend the ball. I will write more about that soon!
Our doctor told us that we could “properly exhale” once we get to 24 months post-CAR T. That will be March 2023. So while these results aren’t a full exhale, they are the breath we need to enter into the next season. For that, we give thanks.
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