God of All my Days

Last month, just as we were about to head off with our car all packed to the brim, we received a call that our long-awaited camping trip was cancelled. A bad storm had brought trees and power lines down which left the park with no electricity and running water.  We were bummed at the news especially as it had been a difficult week and we were really looking forward to a getaway as a family. But through a generous family friend, God instead provided a stay at their beautiful beach house right on the bay. It was actually much more relaxing than camping... what we really needed! The wise owner of the house had a different perspective on what happened than us. He said that it was actually “good timing” that the storm hit when it did. For if it had come while we were there, not only would it had been dangerous but our camping trip would have sadly not happened anyway and we would have had to pack up and leave! The difference between seeing the glass half full vs. half empty.  🥃 St...

At my follow-up appt last week, my transplant doc expressed concern with the Delta variant surging as well as RSV and other stuff going around. Because I’m still unvaccinated and my blood counts have gone down more, she recommended that I avoid gatherings (especially indoors) until things improve. This has been hard to swallow as I was just enjoying getting back to things recently such as going to my church and seeing friends and family these past few months. Grace pointed out that when setbacks like these occur which affect us all, it seems to be tenfold for our family.  With that said, my doc advised me to go ahead and get the Covid vaccine especially as kids prepare to return back to school soon. So I’m scheduled for my first dose next week. Thankfully my immune panel result from last week came back higher, so we’re hopeful that the vaccine will work in my body despite still being on steroids. Please pray that the vaccine would be effective and that adverse side-effects would be...

I listened to a timely podcast recently. The speaker shared of how Jacob wrestled with God and then ended up living the rest of his life with a limp which always reminded him of his need for God. Kind of like Paul’s thorn. She compared Jacob’s example to the paralyzed man healed at the pool of Bethesda not knowing who even healed him when asked. The chronic limp actually served to become a hidden blessing and grace as it was a tangible reminder of his dependence on God. This illustration spoke to me as I continue to endure a long gradual steroid taper (2.5 mg a month) which would take me into this Fall. My providers want to take it slow this time in hopes that GVHD will not resurface when I’m off of them. If it does, then the prednisone would be less effective the 2nd time around they said. I’m so thankful for these meds, but they are taking a toll on me. I’m dealing with the physical and emotional side-effects of the prolonged taper including fatigue and irritability. I almost feel li...

Maria Home sweet home! After a month-long battle, Maria was discharged this past weekend. She did well persevering through fevers, nausea, and GI issues. Please pray for her full recovery and engraftment of her donor cells. Edward Please also pray for Edward. (Five years post-transplant.) He's been in the hospital fighting some pretty bad GVHD after getting the covid vaccine.  Our family enjoyed reconnecting with Kim and Craig Smith yesterday, sharing fond memories and laughter. Through unimaginable grief and loss, they continue to shine choosing joy each day because of our eternal hope. Ryan made such an indelible mark on us and so many people through his life and loving example... even to this day.  Thanks again for your prayers for these dear friends who are fighting their respective battles well with faith and perseverance. 

Maria Please pray for Maria as she was admitted today for a week of conditioning before her bone marrow transplant next Wednesday. Thankful for her sister, Ana Maria, who was able to be her donor. May God give Maria strength and perseverance. Pray that the graft may take well and protection against side-effects and infection.  From the Smiths: We just wanted to send out a reminder for  Ryan Smith's Celebration of Life.  The service will be held at Millersville Community Church Hope Campus 242 Bender Road Millersville, PA  17551 on Saturday, June 19th at 2:00.  It is an open invitation event.  The doors will open at 1:00.  Once the church is full, there will also be a tent set up right outside the church that will broadcast the live stream.  The event will also be live streamed through YouTube.  The YouTube link is https://www.youtube.com/watch?v=zjZ0Uf2R4bo Also, there’s a blood drive being held next month in honor of Ryan. Please donate...

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!!  😜...