Day +10 |5-5-18|

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. 

I feel like we're on the countdown, although I'm trying to remind myself that sometimes the side effects have been delayed and he could spike a fever at any moment which would get his butt impounded back in the hospital jail. 

The staff at NIH have been great. One of the nurse aides was in awe that Mike is a real life, overalls wearing, tractor driving, farmer. She apparently has a glamorous idea of farming in her head.... I didn't want to dash her dreams, so I let her think that it was all rainbows and sunshine. If she only knew.... it's really more like long hours, and obsession with the weather, and listening to farmer conversations about the grain market, chemicals, fertilizer, what the weather is going to do, what they need it to do, what it did, what it didn't do, and who's already planting, who hasn't started, and other completely insane conversations that rival that of what you'd hear in a high school hallway. 

While we've been gone, we have been so grateful for all of the people who have stepped up and helped us keep things going back at home. Last weekend the girls went to a Family Night event to familiarize themselves with some of the other kids and counselors they'll be with at Camp Kesem this summer. I don't know if I've mentioned it before, but Camp Kesem is a week long summer camp for kids who have been impacted by a parent's cancer. Molly and Lucy will get to attend this year, and they are so excited. My sister Jen brought the girls for us, and we were so happy to see videos of how much fun they were having. The girls got to meet our friends, Brian and Dana, as well as their boys. Dana went to school with Mike and  told the girls some stories about Mike when they were kids, so the girls had some fun questions for Mike the next day! Remind me to never let my kids hang out with any of my friends from years ago! 

Then there are the super generous friends who have been helping with the farming. I know Mike is hoping to get to plant some beans when we get home, but he is so thankful for the hours that have put into keeping things going for him. I was talking to a guy in a waiting room one day and telling him about how Mike's friends are doing his planting for him. I told this guy how lucky we are and how we have some really great friends. He replied, "Yes, it sounds like he has great friends, but I think that says a lot, too, for the character of your husband." I suppose he's right. Although, these friends we are talking about would have a good laugh over that with me, I'm sure :). 

I'm hoping these next 6 days go fast. We have today and tomorrow off, then he is participating in a research biopsy on Monday. Tuesday and Wednesday are also free, then Thursday we will meet with the clinical trial team before they send us home to our wild bunch! 

Mike will have to come back in a couple weeks (1 month from cell infusion), and then again, every month for the first 6 months for scans and labs to hopefully watch the cancer shrink and shrink, and disappear to never be seen again. After that, I think it drops to every other month, and then every 3, or something like that. If at anytime the cancer shows that it's growing, then he will be dropped from the trial. I'm hoping we can bring the kids out with us during one of the return visits so they can meet our awesome team of research doctors and nurses. 

Hopefully the next time I post it's to declare that we are home and squeezing our kids! 

Xo

Robin