Home again, Home again.

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Beaudin and I arrived home late last week and we are SOOOO GLAD TO BE HOME.

Pardon while I shout it from the rooftops. Nothing like a couple solitary weeks in Philly to make you come home and drink in allll the goodness. I walked around the local grocery store yesterday and couldn’t get over how comfortable and good it felt to be in the familiar.

Everyone is glad for us to be back, including but not limited to Selah who cried frantic tears as I left to run errands today, “Please mama, don’t go back to Filayellfia!!!!” Trauma is so dumb.

Jude is thankful to have us home too. One silver lining of the time separated is how sweetly the boys re-engage after we come home. At the airport, as we waited for our bags, they were enamored with each other asking questions about the other ones time, showing each other new things they’d learned, etc. I heard a couple remark, “Goodness those two are excited to see each other, I wonder if they are cousins.” They were quite excited to be together. It’s true, distance does make the heart grow fonder.

Beaudin is feeling good. When we left Philly last week, his ANC (absolute neutrophil count) was quite low (400), but he had a bunch of monocytes- which are the precursor to a jump in neutrophils. His CHOP nurse called to let me know his ANC was low right before we boarded the flight to come home. From inside a packed terminal at the Philadelphia airport she let me know to “just be careful with public things.” I laughed out loud and replied, “Well, once we get out of this airport, off the packed plane, and through DIA, then we will start being careful.” Goodness knows exposures are everywhere right now.

Thankfully at our local hospital visit yesterday his ANC had already gone up to 850. 850 still being very low for the average person, but gets us out of the danger zone to some degree.

Beaudin is back to his post Car-T anorexia which is the most annoying side effect we experience. He is rarely hungry, and even more rarely does anything appeal to him. He will stand staring into the fridge while I list off every food I can think of, all of which sounds unappealing. Thank goodness if I put food in front of him he will at least nibble at it. This is a common side effect of CarT and is also exacerbated by the pre-chemo he received which wipes out your taste buds.

On the topic of eating, Beaudin’s growth has more or less plateaued since beginning CarT treatment last year. Even through standard cancer treatment which is known to slow growth, he was growing on clip with the norm. But since CarT, everything has stalled. This is to be expected, anorexia being an expected side effect of the treatment and just the general mucking around with bone marrow limiting how things develop. However, we are eager to see things fall in to place and his growth catch-up. Luckily, he started off above the 75th percentiles, so we aren’t in a too much trouble, yet.

Here is his growth chart. The red line being his previous, during chemo growth, and the yellow showing his CAR T growth.

Yesterday we had a local clinic visit. All of his labs looked fine. A more robust discussion will be had after his Feb 8th lab work, but we did briefly discuss what next steps would be. The main thing I was encouraged by was our team mentioning that they had been discussing Beau’s case the last couple weeks at the weekly department round tables. It’s so nice to know they are still working hard to understand what is best for him, even while we are away at another facility for a trial. The conclusion they came to was that Beaudin is singular data point, with an odd case that can’t easily be tossed into statistics, therefor we have to follow the disease and allow it to direct treatment (as opposed to protocol or risk directing treatment.) and as of now, he has no disease, nor has he since last January (2020). The conclusion was that they would support a “wait and watch”. None of that is set in stone, nothing ever is with cancer. We have to see the labs and get the official input from all the teams. But it feels like we are one step closer to….something. In many ways, wait and watch can be even more nerve wracking than taking action towards something, but it is an unknown that feels a small bit hopeful.

Thanks for reading along, always glad to have you guys here.

8 comments

  1. Always glad to read your updates and hear snippets of your life. So glad to have you back in the state and closer than Philly!! Thank you for taking the time to update us all on a boy we all love very much!

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  2. Betsy, Thanks for keeping us updated. I may be far away now, but y’all will always be so very near and dear to my heart. I am thankful you like to write so I can keep updated with my sweet Beau. Sending continued prayers and love to y’all! ❤️🙏🏼

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