Day +187

Saw this. Loved it. Sharing it. 

Trying to keep you in the loop! Don’t want to go too long inbetween again. You’ve all come this far with me and I’m so grateful for that.




Last we spoke XY study was up down, up down. Doc would threaten a boost/top off and then it would go up. Take the boost off the table and it would go down.  So he put the threat back out there and two weeks ago it went up to 95.5%!  Last weeks visit he was very pleased with the increase but I told him to threaten again anyways... and today we learned it went up to 98.5%!!! 🙌🏻🙌🏻🙌🏻

Kendall has been wanting to give gymnastics a go. So, of course, during today’s introductory class that email came through where I learned this amazing news.  I almost... ALMOST gave that cartwheel round off back flip a go but I decided I didn’t want to impress the teacher off the bat like that.  She would expect big things out of Kendall 😜

This past Sunday was my 6 month birthday. 6 months! Another huge milestone behind us.  When I learned I was heading for transplant (back in a June), I reached out to my prior oncologist at Loyola (in a complete panic attack meltdown) just to let him know what we learned new and where this was all going.  His words were so calming, but stern. “You are going to kill this. THIS is your potential cure. And if anyone tells you different, they’re lying, but, the first 6 months are HELL.” Here we are, over another mountain 🙏🏻

6 months old!

My liver numbers are elevated. What does that mean, you ask? 🤷🏼‍♀️ Good question. Perhaps a sign of graft vs host disease (GVHD) presenting itself - something they want to see a little bit of.  It shows donor cells are fighting Rhonda cells.  We want NO Rhonda cells!  So they upped my liver meds and we’ll keep an eye on it. No, it’s not due to my occasional cocktail 😉

My doc visits have been reduced to every two weeks. That’s a major break! (For me anyways. Haha) My dad asked what I cared?! I always get breakfast or lunch out of the deal! Which is true. But, the less I need to walk onto that oncology floor...... yeah. You can imagine. I’ve been downtown Chicago more in the past 8 months than I have my whole life.  Hell, I can even say I lived there. In a penthouse. With a multimillion dollar view.

So here’s what’s going to happen... I go back next Friday, on my nieces 12th Birthday, by the way... 12!!! Ahhhhh! How is that possible when I’m only 24?!?!? 😩 I’ll make doc expedite that XY study.  4/5 days later we’ll learn it hit 100%. I’ll get my requested bone marrow biopsy to confirm all results.  Get these $!?&$ tubes out of my chest AND THEN WE’ll ALL MOVE ON WITH OUR LIFE.  Can I get an Amen?!?!

Be well!

Rhonda Kay
xoxo