The waiting game continues.....

First of all, Happy 2020! Hope y’all had a great NYE and are fixin’ your black eyed peas and gearing up for some college football! 🤠🏈

On the biopsy front, not quite the results we were hoping to get. While his cellularity and blast numbers came down, it was not as much as we’d like. C has a complicated case with complex variables and challenging genetics that make him more treatment resistant. We’ve known this since the beginning so we‘ve been anticipating some mental “heavy lifting“, but this one left us a little weary. A couple of days into week 8, we emotionally and mentally needed a decent win. But, all we can do is get our heads back in the game. With the more recent chemo he has been on, sometimes the numbers are slow going/prolonged to bounce back. Therefore, we will do another bone marrow biopsy in the next few days (b/c tomorrow is a week from last biopsy) and see if the numbers continue to trend down. Either way, we are going to make the most of the next days-week and look at what established (later phase) clinical trials are available. People always think clinical trials mean nothing else worked - that isn’t the only way to look at it. With treatment resistant AML, clinical trials are always included in the mix bc of the tenacity of this disease. Clinical trials can offer the latest promising drug combos. But let’s not get ahead our ourselves. We would likely do another chemo combo first. One thing you learn quickly with cancer (guessing chronic or acute disease in general), planning is out the window. You can research and be prepared for curveballs, but actual planning, fugget about it (cue mob voice).

We had rounds already this morning. We had discussed the importance of getting a few days at home to recharge. Our doctor agrees. So the goal right now is to get C immune-ready for some days spent out of here, in our own home. 🙏🏼 And to get his body some rest before we start the next piece (whatever we decide that is). We aren’t rushed - we are emphatic about doing it the most judicious way possible - we just need to know there is a little break on the horizon. We would much rather stay a little longer, take advantage of PT/OT after his head surgery, and go home when the team feels his risk is lowest. So that is the plan, and it’s a welcomed one!

Y’all know us. This will not derail us. We believed that this round of chemo would work, and while not to the extent we needed, we still need to focus on the fact that it did. We were having a harder time resetting our acceptance of that yesterday. I swear half the battle is the mental (F 🤯) game, and luckily these two 👉🏼✋🏼👆🏼👈🏼 (us!) are just the right emotionally compartmentalized, pragmatic, no-nonsense, stubborn, we all know where this list continues to go 😜 people to tackle it. So as C loves to say - It Is What It Is!!! This time just insert an expletive in there. He’s earned it.

Time to leave super-shitty 2019 behind, and move on to semi-shitty 2020! 🤷‍♂️🤷‍♀️❤️

Hope this finds you all well,

C & A

physical therapy 👊🏼