Results and a podcast!

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Well. The boost didn’t work. I suppose there is a more poetic way to say it, but I mean, are we not just about over trying to make a story out of this slog? Oh, just me?

Ok, fine, I’m not over it. That’s hyperbolic. I am just tired, tired of the dark room.

In hindsight, when the IgG levels returned at >650 I should have known that there were lots of healthy b-cells churning out. IgG is the level that should wipe out monthly because of the CAR t-cells eating through b-cells. Usually that level is under 400 by Day 28. But 650? But I didn’t really think of it. I saw the results publish, and just felt relief because we had chosen to push IgG for a couple weeks because of some logistics, so a higher level felt comfortable.

Once the actual results we were waiting for published, we were on the high way about to take our exit and yes, yes I checked the results while driving 70mph. I mean, typing that out feels to highlight some truly distracted driving, but if you can tell me you wouldn’t do the same, then you’re a liar, and that’s unfortunate.

So full b-cell return- CD +19, 40%, CD +20 40%.

The rest of the details I recorded and published to my podcast. Surprise, I have a podcast!! Not really, I mean, this is the first “episode” and actually I may delete it later once I get the podcast up and running for what I want it to be (which is a story telling place for pediatric cancer parents.) But for now, I need to get all the thoughts out of my brain and the writing medium isn’t cutting it.

I just spend 20 minutes in a medical journal rabbit hole trying to understand how CD19+ b-cell return related to mechanisms of relapse just so I could explain it directly to y’all.

So, check it out. It’s live on the anchor platform here. I think you can search “The Heavy Wait” on most podcast platforms in the next 24-hours, but really have no clue. I’m new here. Let me know if you actually find it. Also, there is language in the podcast not suitable for children. This shouldn’t surprise you if you’ve been here long enough.

If you don’t listen. Rude. But if you do, listen at 2x speed, bc I feel like, listening back, I am speaking very slowly.

Also, if you don’t want to listen. Here is the high level. B-cells are back. We are “done” with CAR T therapy. We return to CHOP next week for month 6 tests- because though we are “done” we are still on trial. After those results, which we expect and pray to be cancer free, we will decide how to move forward. Options being more treatment, or wait and watch believing this was curative. Us leaning towards the latter.

Okthanksbye.

8 comments

  1. Prayers continue for you guys as this journey moves forward. I know words seem empty but prayers are massive! Hold on….you and Josh are amazing!!!!

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  2. I have no particular worry or poetic or new words. This sucks. I hate this for you (and Beau, obv) and your family. I know you do too. I am amazed and inspired and not remotely surprised how you continue to fight and research and read for Beau, and yet, what else could you do? Your definition of hard is so much different than it is for the rest of us. You are an incredible mom, and I wish it didn’t take such a sustained, Herculean effort to be one in your situation. Hoping desperately you can wait and see all the way to a declaration of “no more cancer.”

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  3. I hope this the end of this chapter. the b cells returned and they are all good and healthy. I am so sorry you are going through all this worry. but praying, hoping, proclaiming, believing that the cancer chapter is over. and a new one with all of Beaus favourite things begins!

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  4. Thank you for sharing your podcast.
    Today is my daughters 3 yo diagnosis anniversary of ALL and I shared (again) your blog post “to the mom who’s about to hear it’s cancer” because it summed up so well what that experience was like. Along with our own story of diagnosis. I am so sorry your son and family are dealing with relapse now. I identified so much with the end of your podcast. Not knowing if this is the end of the cancer story or just the beginning and the worry about every little issue (all of which are so normal for most kids). Ironically I’m a nurse on the leukemia team that treated my daughter and was prior to her diagnosis and continue to be. I lived an odd tangled life these last few years. I’ve seen the gamut of success stories, miracles, and heartbreak. The thing that really keeps me up at night for my own daughter is that not knowing where hers will eventually end up. It is so easy to tell people to enjoy the “your well now!” Parts of this, but it feels impossible to not worry and always feel like you are waiting for the other shoe to drop. My mother asked me recently when we can stop worrying it might come back…1 year, 5 years after chemo ends. I told her I think we stop worrying when we are dead, I don’t think it ever really stops.
    Best of luck to you all in Philly ❤️

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