On Friday, Tony and I left for the hospital at 8:30, right after getting the boys to school. We got to the hospital just before 10 and they called us back about 5 minutes later. They set us up in a private infusion room (all his other blood and platelet infusions have been in a large shared infusion room). The first order of business was to put a midline port in his arm. By happenstance, the guy putting it in went to high school with me. Tony much prefers this procedure to the bone marrow biopsy, but he still dislikes the pain the lidocaine causes in order to numb pain.
We were initially told that the DLI would be around 11. But they quickly found out he didn't have a recent enough type and screen, so they drew the labs for that and pushed the DLI back to 12:15. They got the type and screen done but then the guy delivering the Lymphocytes got caught in all the construction traffic and didn't arrive until 12:45. He brought in this awesome R2D2 looking thing.
The cells were cryofrozen and they keep them frozen until right before the infusion. He wasn't allowed to thaw the cells until the doctor signed off on it. But... the doctor was in meetings. So this awesome guy (Josh) had to just hang out with us and Tony's nurse until 2 o'clock when the doctor finally got out of all of his meetings. Then this guy walked us through all the steps. It was a very interesting process.
This metal case holds a bunch of cassettes.
He then pulled out the one cassette that actually had anything in it. (Since this is his first DLI they give a very small amount of cells to make sure he doesn't have a strong reaction. His next 2 doses will be a higher number of cells)
It is such a small number of cells (a million per kg of Tony's weight) that they actually have to water it down to make it a large enough volume. So it looks a bit like pink lemonade.
It's then thawed in a water bath (sort of like the machines they use to warm up baby bottles, but for bags of blood instead 🧛)
And then the big moment we'd all been waiting for took a grand total of 4 minutes. It was a very small infusion so it didn't take very long.
We then had to wait to make sure Tony didn't have a reaction, and he had to get the midline port removed. So even though we spent most of our day at the hospital, it's actually a relatively quick and painless procedure. We were very grateful for his wonderful nurse who was one of the kindest people we've ever met, and for Josh (the one who handled the Lymphocytes) who spent over an hour entertaining us with facts and stories. And we are so extremely grateful for everything Kevin was willing to go through in order to give his donation from all the way over in Germany. This procedure is far and away less painful/dangerous than going through another bone marrow transplant.
As for the title, we asked what some of the symptoms we can expect would be. The nurse and Josh's immediate response was creamed corn. They said the preservative they put in the cells to make sure they stay fresh would make Tony's breath smell like creamed corn for about 24 hours, and they were totally right! So bizarre.
