Daily Dose: January 21, 2021

Yesterday we spoke with the CHOP team and made plans to fly out to Philly to attend a consent meeting regarding Beaudin’s participation in the trial. We will be there Feb 3rd, for a single day visit. After that visit, once the dotted lines are signed, his t-cells will be transported from Denver to Philly and they will begin the process of enhancing them into super power fighter cells. That process takes 4-6 weeks. At that point, we will return to Philly for them to be transfused and have to stay around for 6 weeks following.

Kind of similar to the way that no one came flat out and told us the course had changed from “Yay we are almost done!” to “Hard stop, you’ve relapsed.”, a similar energy is flowing (or not flowing) around the CHOP study. There are a bunch of conversations happening, medical data being sent and reviewed, a handful of teams all working together, but no one has come right out and said, “No you are officially on the study path. This is the way.” It continues to be a slow drip of information and when one of those slow drips seems monumental (like the phone call yesterday that confirmed insurance was squared away and we could come for a consent meeting) no one seems to mark the occasion. And really it wasn’t a single call. It was a 7am call on Wednesday from the insurance department confirming they had things “lined up.” and then a 4pm call from the nurse coordinator saying we had an appointment Feb 3rd, and another team would reach out to arrange travel.

Al the calls feels the same. Calls from the Denver Apheresis team for a surgery follow-up questionnaire, felt about the same as the call from the CHOP nurse coordinator about our admission into a life-changing study.

I understand that these people work to walk an emotionally neutral road, but it’s hard on the receiving end of this. Yesterday I got off the phone regarding the consent meeting and told Josh, “We are going to Philly Feb 3rd.” He replied excitedly, “So we got in?” I said, “…I….think….so….?”

At diagnosis there were a lot of official things that happened, and not to say we still didn’t feel completely swept off our feet, but we at least felt…. swept off our feet. We could tell inside and out that life would never be the same. For one, we were stuck in a hospital room for 96 hours post diagnosis, and then back a couple days later for 2 straight weeks. I hated it then, but looking back it was almost like a forced realization. This. is. happening.

Relapse is weird. It feels impossible, and feet sweeping, but also so normal. The never ending calls from hospitals, medical billers, insurance personnel, the emails from MyChart, the text messages from the Pharamacy… they aren’t overwhelming. Which is nice, but also doesn’t allow for my brain to connect the dots on the fact that everything is about to pivot. In the normalcy that is pediatric cancer at this point, we are finally accepted into a really amazing/exciting study and it almost goes unnoticed.

So let us notice it for a moment here……!!!!!!!!! Phew!!!!!!!!!!!!!!!!! (Big, loud, exhale.)

And just like that, the wave of reality hits that this is actually happening. That we really are in relapse. That we really are going to up and move to Philly for 6 weeks and have to actually figure out what that means to our family (do we take everyone? do Josh and I split the time….?) Reality….That we really are hoping and praying that this new science, is the science.

I got a Christmas card in the mail yesterday from my cancer best friend. Her son was diagnosed a year to the day after Beaudin. We’ve grown close in all the unspoken ways that cancer creates. And when Beaudin relapsed she was both the first person I called, and the person I least wanted to tell. We had been the beacon in her son’s diagnosis, the “what the expect”. But now we were relapsing and she was the only one who would get it, like I needed it to be gotten. She was heartbroken along side me, and it felt empathetic in a way that no else’s sadness could reach. Anyway, her card arrived and the handwritten note in the bottom corner read “Let 2021 be when this all ends”. I wept. With Car T therapy, Beaudin will receive his last chemo (ever. God willing.) in March. 2021 could really be when this all ends.*

May it be so.

(*But gosh, then what will I write about… just kidding….I’ll find something…..or it’ll find me. Always does.)

3 thoughts on “Daily Dose: January 21, 2021”

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