God of All my Days

After a few days of eagerly awaiting my CMV results, I was so thankful to finally find out that my level has decreased to half of what it was last week. It’s still high but it’s encouraging to know that it’s trending lower which means that the anti-viral meds are working. And that also means that I don’t need to go in today to get a PICC line again!  🤗  My steroids appear to also be working as my GI symptoms have greatly improved and I’ve been fever-free. Thank you for your prayers for this!!  🙏 Here’s a video of me throwing my first pass to Christian in a year after I got my PICC line out a month ago.  🏈  So thankful I can continue to use my arm without restrictions! 

Since I've been home, I’ve been feeling steadily better but still had some fevers (which was strange since I’m on steroids). I found out last week that a test revealed that a latent virus (CMV) had reactivated in my body which explained my fevers and low blood counts. The level was crazy high through the roof. The reason is I have no immune system and the steroids suppresses it even more thus causing my CMV to have reactivated. Today I had my follow-up visit at Perelman. My blood counts remain unchanged but my liver levels are half of what they were last week which is great news. I’ve been taking an oral antiviral    med for my CMV and re-checked my level during my visit today. We’re eagerly awaiting the result. If it’s not any lower, then they'll need to put a PICC line in again so I can get it intravenously 2x/day as the oral means would not be enough. Hoping this is not the case as I just got my PICC line out after having it in for a whole year. So many obstacles but praying

Been doing better overall past several days with steroids but did have few nights of fever spikes including last night. Had follow-up appt today at Perelman. My blood counts are very low. My NP thinks my recent fevers and low blood counts may be due to a latent virus that may have reactivated in my body and/or some of the meds I’m taking. Cause she said it’s strange that I’d have fever when on steroids. So she’s holding a bunch of meds and may switch some if symptoms improve. Also had some more blood tests to check for the virus and concerned with possible gvhd of liver cause of elevated liver levels. Will follow-up again in a week. Please pray for strength and perseverance. Thanks! And appreciate your continued prayers for Ryan and his family. I’m so inspired by this warrior and his parents’ faith and perseverance. Here’s a recent update from his dad: Ryan's body is a wreck but he's doing okay, considering where he's been.  His doctor's think his leg looks good, althou

I’ve been hanging in there this past week with continued unrelenting fevers. This means they’ve needed to do repeat blood cultures many times. Not fun.  My colonoscopy went smoothly on Monday and showed some significant inflammation in my gut. The pathology report finally came back today showing GVHD to be the culprit of my diarrhea and fevers. It makes sense as I recently stopped my immunosuppressive meds. The treatment will be steroids which we will start today. Please pray that my body will respond well. I hope to go home soon pending my fevers resolve. On a side note, there was a platelet shortage in the hospital which held up my treatment as I needed a transfusion prior. I also needed a blood transfusion today cause my hemoglobin has been running low. Just stark reminders of the need for blood donations esp. during this covid season as many patients are dependent on them. Here’s an update on Ryan from his mom emphasizing this need as well. Please consider donating if you’re able.