Apheresis

Saturday, September 10, 2022 · by John Lilly

Sam's procedure today to collect T cells for banking went well. We saved them in the event that we need to use them down the road as part of CAR T therapy in response to any relapse. Hopefully we'll never need them, but I'll post a picture to show you what they look like -- kind of like a watery tomato juice.

As I mentioned in yesterday's post, the process is called apheresis (we're learning a lot of new words!) -- they took blood out of one arm, ran it through a machine to separate out the cells of interest (in Sam's case T cells, but could be other types), then put the blood back in the other arm. Over the four hours of the procedure, they processed three times Sam's blood volume. It's completely astonishing to me that we can head to the hospital in the morning, Sam can have his blood cycled three times before lunch, and then he can be off to school and a football game (where he is now) -- and to collect cells to use in an even more astonishing process of immunotherapy. I'm beyond grateful for the nurses and doctors and scientists and technicians who figured all this out and make it possible every day.

But: hopefully it will prove unnecessary.

For Sam & me today, it felt pretty different, because the apheresis unit is in the main hospital, not the pediatric oncology unit. Sam felt it immediately, saying "this is way more intense" -- it felt a lot more like a cancer therapy factory -- not a lot of warmth, lots of older adults moving slowly without much energy, and just a lot of people getting treatment. And this was the first time when they didn't really let me or Kathy (or both) stay with Sam during the bulk of the treatment.

He did great, taking it all in with calmness (and a few episodes of Breaking Bad). He's been amazing about this stuff throughout -- he hardly ever complains about the hand he's been dealt, keeps an even head, and has just been incredibly steady about getting up every day and doing what he needs to do. He's been incredible and resilient, without any resentment that I can detect. Zack has been, too. I know we'll have some times that test those qualities (probably can't do our planned Hawaii trip for Thanksgiving or our LA trip to see friends between Christmas and NY), but Kathy & I are both so grateful and proud of how both boys are persevering.

For myself, I still get sick to my stomach when I see them hook Sam up to machines -- here's a picture of him before they poked him, with the apheresis machine at the right of the picture. There's no sugar coating how it feels to see someone you love go through so much poking & prodding & battering, even in the service of getting him better. But he's in good care, and doing well, and this won't last forever, and we're looking forward to better days with fewer needles.

Overall though, a good day, and went well enough that we don't have to go back tomorrow for a second day. Now just working on getting his numbers good enough to get admitted and get moving on phase 2 (consolidation) next week, after a brief weekend pause and chance to catch the Paly-Gunn football game.

♥ 31 hearts

2 comments

Elizabeth Gomez · Saturday, September 10, 2022
Thank you for sharing your journey. All our love!
Sean White · Monday, September 12, 2022
Such a strong kid. Sending y'all lots of love.