Balancing act

I had my follow-up appt at Perelman yesterday. I’m thankful that my body has responded to the steroid treatment as about half of the people who develop acute GVHD do not respond adequately to steroids, making it an extremely challenging disease to treat. Please pray that my GVHD will be held at bay as I continue to gradually taper my steroids. Thank you. 🙏

Steroids are great but have some nasty side-effects. For example, they wiped out my already compromised immune system. This means I can’t get my next round of baby vaccines until I’m off of them. That goes the same for the covid vaccine. So depending all the more on herd immunity 🐂🐂🐂as many others get vaccinated in the upcoming months.

The steroids also caused the CMV and another virus to reactivate in my body. So I’m waiting on these lab results taken today. Praying that the viral level is lower (and better yet undetectable so I can stop taking the anti-viral med.) The reason is this med has a side-effect of lowering blood counts. It’s truly a “balancing act” which my providers are doing an amazing job with!

Cause of my very low blood counts, I had to get a transfusion of platelets and neupogen shot today to help increase my blood cell production. 

It was a long day in clinic today but nothing compared to what Ryan has been enduring recently. Ryan has been in the hospital for over a month now. It’s been an unbelievably grueling road for him and his family.

Here’s a recent update:

Ryan developed another blood infection over the weekend.  Luckily it was caught early.  His fevers have been trending down, but he is having a tremendously hard time holding onto blood products.  Even with daily transfusions, his hemoglobin and platelet levels are severely low.  Lots of testing is being done, but the doctors aren't getting definitive answers as to why.  It could be due to the infection, it could be his leukemia, it could be due to bleeding in his body and the source hasn't been located yet.  He has taken many steps in the wrong direction and he is just so weary.  He's trying to hard to keep fighting.  Please pray that today's transfusions help bump him in the right direction and that his body will accept the donors' blood products.  Pray that his nausea will subside and his GI tract is protected.  Pray that his IV nutrition provides what he needs for his healing process.  Pray that the infection in his body clears.  Pray that his incision site pain subsides.  So many requests...thank-you dear friends.  

On a positive note, Ryan was able to walk without a walker and any support last week (amazing!), and he will benefit from ongoing home PT upon discharge to regain his strength and mobility. Ryan will also resume his gene-inhibitor meds to treat the mutation he has as well as eventually chemo for his leukemia. A relentless warrior indeed. Appreciate your continued prayers for Ryan and his family.