Back in April, Mike participated in a clinical trial using car T cells to hopefully cure him from the lymphoma that had invaded his chest.

Two months after the car T cells were infused back into his body, we heard the words we have been wanting to hear for over two years. Complete remission![...]

It's been 10 days since Mike received his new cells. So far, he hasn't had any major side effects. They monitored him very closely for the 9 days he was in the hospital, always checking for low blood pressure, high heart rate, or fevers. These are the more common side effects they would expect to see, although more severe ones like neurological problems could arise as well. Luckily, he hasn't experienced anything too unusual. One afternoon he felt a little light headed, but they gave him some fluids and he was back to being his ornery self. Yesterday he was discharged from the hospital to a local hotel for another week. He said he has never been so happy to not have to record his fluid intake and urine output! I was mostly just happy to get to sleep next to him in the same bed. [...]

Go CAR-T cells, Go! Yesterday, after a long day of sitting around listening to Mike tell me all of the wonderful things he loves about me, he finally got his new, genetically engineered T-cells infused! I might have dreamed up part of that, but I do know for sure that he got his new cells. [...]

Mike had his last dose of Nivolumab on March 6th. They had to stop giving him that drug because it was causing some problems with his liver. The doctors decided to go ahead and scan him to see what the cancer was doing. The results from that weren't what we wanted, so we had to wait and see if we could get into a clinical trial at the National Institutes of Health (NIH) in Bethesda, Maryland. The doctors at KU basically told us that they're running out of options and we should try to see if we could do this trial. After a stressful wait, we got an appointment to get tested for their trial for a new therapy called CAR-T therapy. We flew out here and spent a couple days doing tests (scans, bloodwork, etc) and a couple days sightseeing in DC while we waited to find out if he got in. [...]

October through January were pretty uneventful over here. I guess that's why I stopped writing. I wanted to feel normal. Not document infusions every 3 weeks. So to fill my mind with distractions, I have focused my energies on house stuff and baked goods. Now all I have to show for it is several half finished projects, scattered paint cans, and several unwanted pounds. [...]

First of all, I'll update: I suppose I left things with a bit of a cliffhanger. It just felt so ridiculous to get back in here and say something dumb again like, "what a rollercoaster!" But for real! The appt after Mike felt they were telling him he had 6 months to live, was another twist. [...]

Did ya miss me?

Sorry for ghosting you. I hit a wall at the end of April, where I was just d.o.n.e. with cancer consuming our lives. I was tired of feeling like it defined our family. It was all we talked about, thought about, breathed. I needed a break to catch my breath. I needed to live the life I was missing.[...]

Last week, and the week prior to that, felt heavy. When Dr. Ganguly walked in that room, on April 4th, handed Mike the PET scan report, and said, "This is bad." Our world felt like it was unravelling.[...]

When Mike and I would talk about what we thought the future looked like as far as his cancer & this transplant were concerned, we were pretty realistic. We didn't really think he would have and "All Clear" PET Scan after this transplant. The mass in his mediastinum has just been so stubborn and difficult. We figured he would have a scan and then find out that there was still just a little bit of cancer left that would be cleaned up with the Brentuximab immunotherapy drug that he would take for the next year. That was how our "best case scenario" played out in our heads.[...]

We're home! I have been thinking about this post for quite some time. I haven't been able to fully sort out my feelings though, and I didn't want to just put a post up that said, "Good morning! We're home. The end." Although, in retrospect, I probably should have, if only to keep everyone updated. To be honest, I just haven't been feeling like writing. That's unusual for me, but if there's one thing for certain, it's my unusualness. I think about writing all of the time, I think about all of the things that I want to say, but when it came down to actually doing it, I just didn't have the motivation.[...]