Here's to SCIENCE! Day +1 |4-26-18|

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. 

They expect that he will feel fine for several days, and we will really start looking for side effects such as high fevers, fast heart rate, low blood pressure around days +4 through day +9. On day +9 (May 4) he will get discharged if nothing is keeping him hospitalized. Then we'll have to stay in town until day +14. They have seen patients get discharged on that day +9, then start having fevers on day +10 which earns the lucky recipient a quick admission back into the hospital. There's really no way to predict how Mike's body will react and handle the new cells, so let's do what we do, and wait to be surprised! 

Today felt like a great day. Today WAS a great day! The sun was shining, Mike and I spent a large amount of time laughing about all kinds of things. Also, little Lucy lost her top tooth that she's been working on for months! Actually, Lucy losing that tooth almost makes me mark this day in the SAD category, but even though it breaks my heart to see her smile change and lose that little part of her looking like a little girl, I am of course grateful that I have this beautiful growing child... missing teeth and all. 

I remember so clearly when we were at Mayo in February 2016, and Molly lost her very first tooth. This is at least the 2nd lost tooth we've witnessed via FaceTime. It breaks my heart to not be there for even the smallest of things like this. I always remember that it will all be worth it, and I hope I don't have to explain to a therapist why we weren't there and why the Tooth Fairy wouldn't negotiate with Lucy's demands of $20 per tooth. 

I checked into the Safra Lodge yesterday, but didn't sleep here last night. For some reason, sleeping this far away from Mike feels hard. The lodge is only a 2 minute walk right down the sidewalk on the NIH campus, so really, I'm not that far, but what if I miss hearing Mike get his vitals checked every few hours?! How will I possibly sleep through the night without interruption?! I guess I'll never know if I don't try, so here I am tonight, in a room all by myself, 1,090 miles from my own bed, and the 3 kids who take up all of the room in that bed. 

You know what has been awesome coming out of these past couple weeks? The time I've had to reflect on everything in our life. The chaos. Life has felt like total chaos the last few years. I've felt like I was drowning, (I can swim), I was going through an earthquake, (we found out we had a solid foundation), like I'm a wife to a husband with cancer and mother to 3 small children & a hyper golden retriever (hold up. I got this.)

The thing is, I've tried so many tactics to work through the chaos. I've tried fighting it. I've tried controlling it. I've tried giving up, eating all the things, laying in bed crying. Nothing worked. And then.... then I realized I can just embrace it. I can laugh with Mike about all of the crazy things that we've experienced...and not just in the past 3 years.. but really since our wedding day. Hello downpour all day except when we were taking pictures. We can laugh about how seriously the secret service took their jobs of denying doctors access to hallways because Melania Trump was walking down the hallway in the hospital. I would have put my money on the doctor. He was not happy! We can laugh about the shuttle driver making us sit in the van for 5 minutes waiting for 0 patients to hop on and then pull into the next driveway to let us off at our hotel. Or the really funny one- when the nurse asked if we were high school sweethearts.... bless her heart for not suspecting I was in 2nd grade when he was sporting that Homecoming King's crown. (Don't worry, he's totally moved on..... or not.) 

Anyways, life is just easier when you learn to just go with it. Whatever. It's fine. Cool with me. -- These all help my days pass by without added difficulty. That, and awesome grandparents who help with the kids and keep things going on the home front. Seriously. We are so so so thankful that we can sleep easy knowing that the kids are taken care of and loved. And that the next vitals won't be taken for 3 hours. 

Goodnight!

XO

Robin