God of All my Days

At my clinic appt last week, I found out that I had gained another pound back over the past few weeks. That was encouraging news as I had lost 10 pounds last month cause of my gut GVHD. Though it was a mere pound, my awesome NP Jackie and I said “we’ll take it!” One day and one pound at a time!  Great news... my recent labs showed that both viral levels have gone down significantly. So I’ve decreased my anti-viral med dosage, though I’ll still need to take them until around June when I’ll be done with my steroid taper. Hopefully now my blood counts will be able to improve in time.  Please also pray that my viruses and gut GVHD will be held at bay esp. after I wean off of these meds. Acute GVHD can arise anytime up to a year post-transplant, but hopefully my symptoms will be held at bay as time goes along and my body gets used to my donor cells.  🙏

From Ryan’s mom: Our family privately celebrated Ryan's life at one of his favorite restaurants today, Fireside Tavern.  A Celebration of Life will be held at our church, Millersville Community Church Hope Campus 242 Bender Rd, Millersville, PA 17551 on Saturday June 19th at 2:00.  All are welcome to attend to celebrate his incredible life and legacy.  God placed this on my heart to share with our family today.  May you find comfort in Ryan's words too.  When Ryan wanted to get his tattoo, he did his research.  So when he asked permission to get it, he proceeded to tell me his reasoning.  Even though I didn’t want him to get the tattoo, I told him that he was an adult and could do what he wanted.  In reflection, I look at the timing of the tattoo.  It was a month before he was diagnosed.  The tattoo’s meaning started out as a tribute to my mom and dad’s battle with cancer.  Hence, the cancer ribbon.  The tiger representing powe...

After a courageous 19 month battle with this horrible disease, Ryan has gone to glory where there’s no more suffering. Please keep Ryan’s family in prayer as they grieve the loss of their dear son. Craig, Kim, Darren (brother), Katelyn (sister), and Molly (girlfriend).  He was a relentless fighter who inspired and touched so many hearts including mine. I met Ryan and his parents at our transplant class just over a year ago. He and I were the only two patients in the class that day. Not sure if it was cause it was a “class”, but I remember having a pounding headache and both of us having our heads down on the table throughout much of the presentations.  🙇  Kindred spirits! After the class, we introduced ourselves and exchanged contact info to keep in touch. We also prayed together right in the middle of the hallway for the journey ahead. I was actually scheduled to have my transplant a week before Ry and was looking forward to walking the halls with him. But my transplant...

Ryan My heart aches as I write this. Please keep Ryan and his dear family in prayer during these final precious moments with loved ones. May God’s loving and comforting presence be so close to them during this difficult time. Here’s recent update from his parents:  Hello everyone.  It has been an eventful couple of days.  As Ryan has been receiving treatments for his infections and bags and bags of platelets and blood, antibiotics and other medications over the past couple of weeks, combined with his underlying leukemia, we have come to the realization that his condition has not been improving.  We knew that if this routine continued, his next steps would be a transfer to the ICU.  After some very honest conversations, this is something that Ryan did not want to happen, so yesterday we took him home so that he could see his friends and family before he died. Yesterday, Ryan was able to visit with his high school friends to reminisce about good times.  He al...

Today marks the 1 year anniversary of virtually (no pun intended!) everything being shut down in our country by the Covid pandemic. It’s been a tough year for all of us. But, as we all persevere in our respective spheres and battles, we will make it through this unfortunate time in history together... hopefully with a renewed perspective on what really matters most in life. A happier anniversary worth celebrating was Grace and my 20th anniversary yesterday. We enjoyed a wonderful lunch outdoors at a French bistro and then walking around Penn’s landing ( Covid-style  😷 ). When we exchanged wedding vows 20 years ago, I never imagined all that we would go through together in such a relatively short time. But, through all the ups and downs, Grace has been my steadfast support who I could not live without. Words cannot express my love, respect, and appreciation for the amazing woman she is.  The black & white was for visual effect... we weren’t married THAT long ago!!  😜...

This song greatly encouraged me this morning. May it bring hope to you as well as it reminds us of our true never-failing Hope who sees and understands no matter what brokenness and wilderness we are in. The God Who Sees

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...