Creamed Corn

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. 

DLI Update

On Monday, Tony's bone marrow donor (from 10 years ago), Kevin, made his lymphocyte donation from Germany. They then overnighted the cells, and Huntsman received them on Tuesday. 

We went down to the hospital on Wednesday and met with the transplant team. They went over the DLI process with us again, and we signed paperwork to give the doctors permission to treat Tony with this treatment. They took lymphocytes (white blood cells) from Kevin and these cells should boost Tony's immune response to the cancer cells. His most recent bone marrow biopsy showed only 0.3% blasts (He had 79% blasts back in February when he was re-diagnosed). The lymphocytes should be able to fight off the low percentage of blasts. There are, of course, some risks involved, but this treatment comes with far less risk than a second bone marrow transplant. 

We will go down to Huntsman tomorrow (Friday) for his first DLI treatment. They will do 2 or 3 rounds of the DLI depending on how his body responds to the cells. The dose of Lymphocytes gets higher for each cycle. If he shows any signs of Graft vs. Host disease (GVHD) then they will stop the treatment. 

104.8

 On Friday we went in for a blood draw. His platelets came back at 20. They usually infuse if they're below 15. But this isn't our first rodeo, so we emailed his doctors to request an infusion for the next day. They gave us a bit of a hard time (he had another appointment scheduled for Monday, but the last time we waited until Monday his counts were so low they were unreadable), but they finally agreed to get him a blood draw appointment for the next day (Saturday). The only available appointment was at 7 a.m. (Though the hospital seemed to miss that memo since no one was there until almost 7:20). At around 7:30, they took his vitals and realized he had a low grade fever of 100.8. They drew his initial labs, and then let us know they would (eventually) be admitting him since his white count was at 0.05 and his neutrophils (the white blood cell that fights illness) was at 0%. They drew a bunch of blood cultures and did 2 different Covid tests. His platelets came back at 9 (again, why they argued with us about getting him in the next day just makes my blood boil), so they gave him an infusion while they waited for a room to open up. They got him up into a room at about 11. All the Covid tests came back negative, but he didn't test positive for Parainfluenza (the flu). By 2 o'clock his fever was up to 104.8. And for the next five hours we fought to get it back down. They eventually had to put ice packs under his armpits and a cold washcloth on his head. 

They eventually got his fever down to a low grade one (100.5). But he had a rough night and morning with it spiking again. It finally seems to have broken for real today, but now he's just exhausted from the last 24 hours. They've taken a few more blood cultures, and plan to do a CT scan if he gets another fever. They just want to make sure we're not missing anything. But the flu virus can certainly make his fever spike like this. It's likely the fevers will keep happening until his white counts pop back up and his body can fight off the virus. 

Last chemo

 Tony started his last round of chemo last night. We arrived at the hospital at 11:30 in the morning and he didn't get into a room until 7:30 so it was a bit of a long day. But everything is running smoothly so far and he should have his last dose early Sunday morning and then be able to come home. In 3 - 4 weeks, they will give him his first DLI treatment. 

No hair...again

We met with the transplant doctor on Monday, and finalized plans to do a donor lymphocyte infusion (DLI) rather than a transplant. That means that Tony will only have one more round of consolidation chemo, and won't have anymore chemo after that! Once he recovers from this next round of chemo, which should start July 21st, we'll move forward with the DLI. We're still working on the timing on the DLI because they need to schedule a time for Kevin, Tony's original bone marrow donor, to donate some lymphocytes. This process should be much easier on Kevin than the original harvest of marrow. It will be similar to donating plasma or dialysis. The idea behind the DLI is that they give Tony Kevin's lymphocytes (a type of white blood cell) to help activate Tony's immune system. They should attack any remaining cancer cells left after doing all of this chemo. They typically do 3 rounds of DLI about a month apart. If Tony starts to develop some GVHD (graft vs. host disease) then they stop the DLI. Here, having a little bit of GVHD is a good thing because that means they've activated Tony's immune system to a point where it will start attacking the cancer cells, and they won't give him anymore lymphocytes. We are so grateful to not have to do another bone marrow transplant and are praying for the DLI to work.

Tony's hair has started falling out again. It was getting to the point where we could pull it out in chunks again. So it was time to shave it off again. Here are some lovely pictures with his bald spots.

ER and Platelets

 Tony's appointment today was at 4 PM in Farmington, and because he was the final appointment, it took about an hour before he got blood results back, and at that point he was almost back up to Tremonton. An on call doctor from Huntsman called us to let us know his platelets were down below 6 again (6,000). So they were too low for their machines to read. The doctor let us know that anytime they drop below 10 he is at risk of spontaneous bleeding in the brain which would be (obviously) very bad. But they were all closed for the evening and he couldn't even reach a scheduler to see if he could be scheduled for the morning, so he suggested we head to the ER. We arrived around 9 o'clock PM. They hung his platelets at around 12:30. His platelet infusion finished at about 1 a.m. 

Now we are just waiting to be released to head back home and get a few hours of sleep. 

Red, White, and ......Platelets

 Tony finished his most recent round of chemo on Sunday June 26th. We've been going down for blood draws to check his levels every other day. When we went in on Friday, his platelets were low, but not quite low enough for an infusion (They were 24 and they have to be below 15 for an infusion). (His white blood cells, specifically his neutrophils are at zero as well). They told us they had scheduled an infusion for Monday morning (today) at 7:10. We were definitely a bit concerned because he was already so low and they were putting it off several days without checking his blood. So we slept at a friend's house in Bountiful last night (Thank you Shay!) and made it here bright and early. They drew his blood and low and behold, his platelets are below 6 (the machine can't read any lower than that). So he's getting an infusion now. His neutrophils are still zero, but his red blood cells aren't low enough for an infusion (He didn't end up needing a red infusion on the last chemo round). 

For now, we are set to meet with his transplant team next Monday to discuss the DLI treatments. He is also scheduled for July 21 to start his final maintenance chemo. And then there should be 3 DLI treatments in total. Then (we think) he should be done with everything.