God of All my Days

Great news... I continue to remain in remission!  🤗  Thankfully, my Philadelphia chromosome result came back still “undetectable” even while having had to hold off taking the med that treats it these past several months. I’ve recently been able to resume this med (which lowers blood counts) as my counts have steadily improved. I’ll need to take this life-saving med the next several years to help keep my cancer at bay.  🙏 My recent immune panel level went up a little bit but still too low for vaccines, whether it’s covid or my baby ones. Truly a test of patience. I’m thankful though that most folks around us have been able to get vaccinated (including all of my kids!) We are a step closer to reaching herd immunity. 🐂🐃🦬 My doc said that if my immune panel doesn’t improve to a certain level by September, then we will plan to proceed with the covid vaccine (though it might not be as effective) especially as kids will be returning to school and thus an increased risk of e...

In Alec Hill’s book “Living in Bonus Time”, he shares that  only 1 in 5 bone marrow transplant survivors live without serious health limitations. As time goes on, I’ve been grappling with the very real possibility of living with chronic disability such as GVHD, fatigue, or something else. All things considered, I am grateful for each day that God gives me but it’s still hard to consider living with a potential disabling condition for the rest of my life. Recently, I’ve been reading a book my brother gave me entitled “This Too Shall Last” by K.J. Ramsey. The author is someone who lives with chronic illness and fatigue which is debilitating. She poignantly recounts how she often wakes up in the morning in pain, feeling tired instead of well-rested. And the “joy that comes in the morning” which the Word talks about is something foreign to her as she can’t remember what it feels like to wake without feeling weary.  Ironically, it’s encouraging for me to read of her perspective on ...

The other day I was surprised to find my eyes watering up cause of Mochi. It wasn’t allergies but rather tears of gratitude and affection.  🥲  When we first got Mochi, I never knew or anticipated the impact she’d have on me. She’s not a “therapy dog” but she’s definitely been therapeutic for my soul (and my body as she loves to run!)  The clanking sound is not my bones but Mochi’s treats in my pocket!  😉 While the kids are in school, I have “Mochi duty” which involves taking her out every few hours to do her business cause she’s still a puppy. But her outings usually are not limited to going to the bathroom, as she loves to play and just relax outside whether it’s in the snow or under the warm sun. So it’s been a habit for us to just sit outside together for extended lengths of time and enjoy the time people watching. It’s also been a great way to catch up with our neighbors and meet many new ones esp. those with fellow canine friends!  🦮🐕‍🦺 I’m so thankful...

Our family went on a road trip getaway to Florida for spring break. We covered 2600 miles of driving... a marathon x 100... a fitting analogy to the journey with leukemia. I was thankful for my steroid-induced insomnia so I could stay awake at the wheel!  😳  Also grateful for strength to do everything we did. We enjoyed good food, fun, and family time. A few highlights were swimming in the ocean and kayaking in the mangroves. These things were not possible for me this past year cause of my PICC line so I did not take them for granted.  We also were so happy to be able to see my brother’s family on the way home. It was fun for them to meet Mochi! Tabby looks great and even ran the length of her sidewalk to wave goodbye as we drove away!  Speaking of marathon, I’ve heard that runners learn to endure pain not only during their races but also from the cumulative effects of running long-distances. One marathoner said,  When we start off we are full of energy. As we ...

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...

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 prayin...

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 ab...