Steel Vengeance

Dear Family and Friends,

Pretty much right after my post on Thursday, Molly's attitude went from being very down to being reinvigorated to continue her fight. We all listened to her, gave her advice, told her we supported her in any decision she makes, even if it is to stop fighting. We see and recognize how much physical energy she has to put in just to survive on a day-to-day basis. All of these pills and cycles need to start at specific times in order to get them in throughout the day. Trying to organize how to take pills at the right time, drinking a lot, eating before, after, when to drink the tea, go to appointments, exercise, rest, and if any of these things gets off, then it all changes, and of course, this happens all of the time.

And, now we have new pills to add in.

Molly has started taking Venetoclax. This drug is new within the last 5 years and has had positive outcomes for temporary remission (not curative) results. We are happy to report that within taking ONE PILL, her counts have already improved! She is also taking a drug called Allopurinol which helps the body deal with Uric Acid issues (kidneys). She has to drink about 4L of water per day to keep her kidneys working properly. This is one of the major side effects of the chemo drug and must be dealt with constantly.

Total White Blood Cell (WBC) count was 14.1 and yesterday it was 7.2! This is a really big deal since this is the total white blood cells in the periphery. These were 86% blasts. As of yesterday they are 80% blasts. The absolute blast count went down from 12 to 5.8. This is absolutely great to see.

She is continuing on the Venetoclax two times a day for 28 days. It is likely her counts will go completely in the gutter (again) and we will need to wait (more waiting) for her counts to recover (again).

And that left lung situation... Molly still cannot believe the CT scan results. Just this morning, after getting back from a ride to UofM East, she kept the oxygen off. She was just resting and after about 30 minutes, she decided to get her O2 Sat level... she was at 96! Her face lit up and you could see that spark in her eye, like I am doing it. I am getting better, even if it is little by little, bit by bit. Her lungs must have looked a lot worse 2 weeks ago... which does go along with her having more pain and not feeling well in the morning.

Yesterday morning she told me that she had the best morning in a long time, no pain, was able to get up and didn't feel bad. We'll take it. Yes we will.

Molly will have her first clinic appointment with Dr. Walling on Monday since being out on hospice. This will be when we decide if she will start another drug, the hypomethylating agent, Decitabine in order for the Venetoclax to work more effectively. Venetoclax is not normally used as a mono-therapy, but who knows...maybe for Molly it is just perfect. We will see her counts on Monday before we ultimately decide.

This process is like a roller coaster - feeling out of control, there is no getting off, but you did get on. I couldn't' help but think of Molly and Aaron riding Steel Vengeance for Molly's Birthday this past summer. They would run from the exit back to the entrance so that they could ride it as many times as they could before it closed. It is a high-speed hyper-hybrid roller coaster and is one of the most amazing rides ever! You feel like how is my body doing this? WOW!  The ups and downs of this journey have been even more than we had with Xander...which I still think to myself, I'm not sure how that is possible, but here we are and she is feeling okay, so go enjoy the day!

A shout out to our incredible friends that are *still bringing us dinners throughout the week. These have been and continue to make a huge difference in our days. Thank you!

Peace and Love,

Emilie