God of All my Days

My body rash has gotten worse esp. on my arms and legs with increased itchiness. And my eyelids are swollen heavy making me look and feel like I’ve been beat up.  🥊  Makes sense since my body has been fighting as Bo’s stem cells engraft. My doc says these symptoms are not a bad thing from a cancer perspective. If so, this rash is something I’ll do my best to live with. Thankfully, there are some meds to help with the itchiness!!  😬 .  It appears as though these symptoms point to a common condition after transplant called acute graft vs. host disease (GVHD) in which my new donor stem cells are seeing my body’s healthy cells as foreign, and thus attack and damage them. Some GVHD is a good thing as the donor cells attack any surviving cancer cells as well. So it’s a blessing and a curse. Please keep in prayer for protection as the 3 ways that acute GVHD usually presents is through skin rash, GI issues, and liver dysfunction. Thankfully, I’m not currently experiencing ...

I had my first post transplant appt at Perelman a few days ago. My engraftment analysis showed I’m “100% donor” meaning that my cousin Bo’s stem cells have fully engrafted! Praise the Lord! They said that Bo must really like me!  😉  Thank you for having prayed for this. Thanks to Covid, I’ll be able to do most of my weekly follow-up appts virtually via telemedicine, so I just have to trek into Perelman once a month! And beginning in January, I’ll need to get Re-vaccinations as I have a new baby immune system.  👶  Amazing!!  It’s been so good to be home enjoying fresh air, home cooked food, and quality time with family. I’m steadily gaining energy everyday doing laps in the house... thanks in part to the steroids.  💪 Been doing my daily 4 hour iv infusions at home with a little convenient portable bag. And I’m getting used to taking my dozens of pill cocktails everyday which I store in my new laptop-sized pillbox!!  😬 Birthday wishes do come true! W...

After a month long battle, I was discharged home yesterday. It’s so good to be home. The first meal I had was Udon noodle soup and Korean pancakes!  😋 This past month was a long one away from family, but so thankful for the updated visitor policy which allowed one visitor a day and of course FaceTime which provided for ways to connect.  A dear physician friend stopped by last week. Was so good to catch up with him. He didn’t count as a visitor though cause he works here at HUP! The nurses and other staff provided such excellent care for me this past month. I couldn’t thank them enough. Here’s a pic of me with my friend Steven from food services. When he’s working, it makes all the difference. Steven knows what I like to eat and he often finds some extras in the kitchen to make my day!  😋 This 2nd pic was from 7 months ago when we first met (before covid)... and when I was chubby and with hair!  There is a magic number after transplant of 100 days. This is how long ...

This past week in the hospital has been marked by unrelenting fevers, stomach issues, and the development of a mean rash on my body. Thankfully, the rash has not been itchy or painful other than on my face and neck, but that has unfortunately been pretty bad. It has been particularly aggravating the past several days despite anti-itch meds, topical creams, and ice packs. Truly a test of my patience!  😓 All of this along with some elevated liver tests seemed to point to me having "engraftment syndrome", meaning my body is just proliferating cells so much. My doc said it's not a common condition but not a bad thing from a cancer perspective. But it's taken a toll on my body and I’m pretty deconditioned as a result. It’s been a while since I’ve stepped outside of my room. I’m on steroids now to treat the engraftment syndrome which has helped but I have a ways to go.  💪   They said that engraftment syndrome can often lead to graft vs. host disease (GVHD). So likewise, a...

I’ve had several platelet and red blood cell transfusions this past week as my levels hit rock bottom after transplant. But we were excited to finally see my levels shoot up the past few days esp. my white blood cell and neutrophil count, which means that Bo’s stem cells are hopefully engrafting!  💪🙏  I’ll be doing an engraftment level blood test at the end of this week to see how much are from Bo’s stem cells vs. mine. This hopeful and encouraging news has been tempered though with fever-like discomfort and continued throbbing bony pain in my legs and feet this past week. It appears that this throbbing bony pain may actually be due to an immunosuppressive anti-rejection medicine I’m taking, a condition known as calcineurin inhibitor-induced pain syndrome (CIPS), not from cells proliferating in my bone marrow from Neupogen as we had originally thought unfortunately. So, I’m treating this pain with a topical gel, a medicine for neuropathic pain, and also a medicine a...