1st Quarter/ Month 3 trip to Philadelphia- quick update

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Tomorrow Beaudin and I will travel to Philadelphia for his Month 3 tests. This will include a bunch of blood work that includes, but is not limited to, checking for b-cells in his peripheral blood, a bone marrow biopsy to check for b-cells and/or cancer in his marrow, and a lumber puncture to, again, check for b-cells and/or cancer in his spinal fluid. The appointment will be about 3 hours.

We arrive Tuesday night, appointments Wednesday morning, fly home Wednesday night. Out and back.

I’ve never been a fan of business travel, but I am slowly but surely figuring out how to make it work for me. My learning are as follows:

  • Do not take the late flight in the night before. We arrive hungry, everywhere is closed and we end up ordering D.P. Dough at 12midnight and it’s not nearly as good as your intoxicated college self recalled. Book, instead, the mid-day flight. Arrive in the early afternoon, allow time for a casual dinner and proper nights rest.
    • You can read about the mistake we made flying in at midnight here and the antics that ensued at Wawa’s.
  • Pay extra (above the stipend from the study) to stay somewhere nice. The study covers $200/night, but unfortunately in Philly that lodges you in some particularly shady spots. This go round we are staying at the Inn at Penn, and I am sure it will be better than the bizarre Homewood Suites situation we were in this summer.
  • Fly immediately home. For past trips I have wanted to stay an extra night, like the night following the procedures, so that it does not feel like such a rushed trip. But as it would turn out, even with that extra night, it still feels rushed. Not idealizing this as something its not, like a vacation, is a better way to do it. Out and back, that’s it.
    • That all to say, you better believe I already arranged for my friend who lives in Philly to come hang out with us in the afternoon after the procedure and before our flight. Just because we are making it prompt doesn’t mean we have to deny ourselves that fun.
  • Do not check any results on MyChart, wait for the nurse to call. Even this far in to the cancer gig, the results are hard for me to interpret and so I have learned my lesson to not check them myself. Leave it to the professionals.

We are really unsure what to expect out of these tests by way of b-cells. I mean, by golly, we sure hope there are no b-cells present meaning the t-cells are still kicking butt, but we’ve been on this road too long to be naive enough to be all good vibes only about it.

Anything can happen, and we are ready for it, mostly……Ok. I guess we aren’t ready for the cancer to ever come back. But, as for the b-cells, well it’s a toss up whether they have returned. If they have, we will be in a precarious position.

For Car T therapy to be considered the most successful, or I guess rather, the point in which you fall into the best statistical group, the t-cells must have persisted for 6 months (some teams say 12months, which is more ideal, but not by much, statistically.) Beaudin’s situation is a little quirky because though he had b-cell return after his original CarT, he never had a return on his cancer. So, even after all of May, June, July, and most of August, without chemotherapy nor functioning CarT cells, his cancer remained gone (or perhaps unmeasurable.)

Does this mean that the 28 days that the CarT from March was around was enough to kick the relapse to the curb? Maybe. Does it mean that he is cancer-free and even would have been even if we hadn’t chosen to do HuCarT this fall? Maybe. Does it mean that the Leukemia is dormant and waiting for it’s chance to make a raging comeback? Also, maybe.

But, as my dear friend Lorin reminds me, the more cancer-free months we can string together, with or without b-cells, the better.

If his b-cells have returned, signaling his t-cells have fallen off, chances are the team will suggest we return to Philly for a “boost” which basically means doing it again, but only staying 3 weeks instead of 6. That’s not a terrible option, I mean, cancer-free survival is always the goal, but I would be remiss to not mention that there are 101 other places I would rather be for the month of December.

So, anyway, this week we are hoping for no b-cells and we are pleading for no cancer. I actually typed out that we are expecting no cancer…That felt a little risky. But I guess truth be told, we are expectant that he is well, b-cells or no b-cells.

Anyway, I will update as soon as results come in, likely later this week. I’ll leave you all with this pic of Selah who spent the weekend at Grandma and Grandpa’s and was not sad about the new dress-up supplies that Grandma had for her. I told her Beau and I had to take a quick trip to Philly and she said, “But Mom! I love Philayellphia….! I’ll be a doctor for Beau too!!!!!!” Ahh, sweet babe.

Thanks for being here.

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