After weeks of learning patience in God’s waiting room, the last few days have been a whirlwind of activity. Following our initial meeting with the KU Bone Morrow Transplant Team the search began for the all-important “perfect match,” the most critical factor for a successful transplant. Miraculously, out of the 120 million people in the worldwide donor database the one and only 100% match, and the doctors’ dream scenario, was a guy who lives just a few minutes from my house named Jack Epps. This news was a great blessing, but definitively refuted the theory I’ve occasionally floated that my brother was adopted. In all seriousness, we just praise God and smile as once again we see His providential hand. I am so thankful for my brother and his willingness to in his own words, “be the hero who saves your life.”
Both Jack and I are now going through a flurry of consultations, tests, and procedures. On September 23, I am scheduled to enter the hospital and begin one week of chemotherapy designed to kill all my bone marrow. If all goes well, I will receive Jack’s stem cells on September 28. After the transplant, I will begin at least 100 days of isolation with at least two or three weeks in the hospital.
When I leave the hospital, as the doctors and new stem cells attempt to rebuild in me a new, healthy and hopefully cancer-free immune system, my wife, Shara will have a critical role as my primary caregiver. Last Friday, we were shocked to learn that Shara needs a hip replacement ASAP. But again with providential alacrity she has been scheduled for surgery on September 22, giving her 3 to 4 weeks to rehab before I come home from the hospital to begin my recovery.
Last Sunday night, I shared with Legacy’s elders my honest conviction that we now have one of the most talented and unified church staffs and elderships I’ve ever seen. Each one of them are highly competent and eager to serve. I know God’s flock at Legacy will be well shepherded and continue to grow as I seek to learn all the lessons and glorify the Lord on the path He has now set before me. My prayer is to soon recover and return to my post.
Once again, let me say how humbled and grateful we are for all of your prayers and kind words and deeds of encouragement. Shara and I truly feel like we are just floating through all this adversity on a great cloud of prayer. Please join us in praising the Lord that He gave me a special brother “for such a time as this.” Please note the plans and dates above and continue praying that God would bring healing and life through this strangely familiar story of a helpless, broken, and dying man being fully restored by the life-giving blood of another.
Grateful and Blessed,
On Monday, June 20, Shara and I met for the first time with my new oncologist, Dr. Yacoub, at KU Medical and were greatly encouraged.
While he did order all new blood work and another bone marrow biopsy, he confirmed that I do have both advanced Systemic Mastocytosis (SM) and Chronic Myelomonocytic Leukemia (CMML). Both cancers must be addressed, and he explained how sometimes when you attack one it diminishes the other, but sometimes it makes “the other angry.” CMML is perhaps the more life threatening of the two cancers, but because of the advanced state of the SM it must be attacked first and now.
My particular form of SM is located in the bone marrow and caused by a genetic mutation. In the past, this mutation resisted all the drugs that had been used to treat SM. However, in June of 2021, a new drug specifically designed to inhibit the C-KIT mutation was approved. In clinical trials, this drug helped many patients achieve a remission in which the bone marrow ceased to make too many mass cells, and existing tumors and lesions shrank.
As there is no cure for the mutation, I will need to take this drug for the rest of my life, or until new treatments are developed. Dr. Yacoub is confident this new drug will help me. In fact, he believes within a few months my existing symptoms will disappear. His goal over the next six months is to get the SM in remission and get me strong enough to undergo a stem cell transplant, which is the only way to cure CMML. We know we have battles ahead, but clearly see God’s hand in the availability of this new drug and the aggressiveness and confidence of our new doctor and his team. I was thrilled to hear Dr. Yacoub say, “I’m not interested in small wins; I want a big win.”
When we left the oncologist Monday, we were told that this new drug is unbelievably expensive, and it might take some time to cut through all the red tape and get approved for it. We were told that KU Med has a special team that would be advocating for us with the insurance company, drug manufacturer, charitable foundations, and pharmacies to try to get the daily pill at a reasonable price. To our utter shock, Wednesday morning I received the amazing news that all those barriers had fallen, and that I would be taking my first dose on Friday, June 24.
I would ask all of our prayer warriors to specifically give thanks and ask God’s blessing on both the medical and administrative teams at KU that God has used to get this treatment and new hope to us. Then continue to pray that I would be able to tolerate the drugs’ side effects well and that the new drug would be effective for me.
Thank you so much for your continuing prayers and for walking beside us through this trial.
Grateful and blessed!
Let me begin by expressing how utterly overwhelmed my family and I have been by the countless cards, calls, texts, and messages of encouragement from our Legacy family, ministry partners, and old friends from literally all over the world. Your expressions of love and commitments to faithfully pray for us in the days ahead have humbled our hearts, strengthened our faith, and buoyed our resolve to walk by faith and honor the Lord in whatever lies ahead.
Tuesday we met with our oncologist, and he confirmed for us a diagnosis of advanced Systemic Mastocytosis with Associated Hematological Neoplasm (SM-AHN). Further, they have identified the AHN as Chronic Myelomonocytic Leukemia (CMML). Our doctor at Saint Luke’s Hospital has accepted a new position at the Cleveland Clinic, and so on his recommendation we have been referred to a new oncologist at KU Medical Center who is experienced in treating these two rare conditions. So, in a way, we are back in God’s waiting room, hoping to meet soon with our new oncologist and hear his treatment plan. It is our understanding that while serious, the CMML is in the early stages. It is at least for now of less concern than the advanced SM, which causes most of the symptoms I am now experiencing. We remain confident and comforted by the truth that my health and life is safely in the hands of the Great Physician, and we ask for your continued prayers on our behalf.
My plan is to be in the pulpit to preach Ecclesiastes 3 this Sunday, June 12. I encourage you all to read that chapter this week before we study it. I marvel at God’s providential timing. Months ago when this Scripture text was placed on the calendar, I could not have imagined how relevant it would be today to my personal life and to all of us living in this cultural moment. My voice is weak, but today I understand as never before the words in Jeremiah 20:9: “His Word is in my heart like a fire, a fire shut up in my bones. I am weary of holding it in; indeed, I cannot.”
Let me challenge you all to be in your place at Legacy this Sunday with your Bible and a friend.
Grateful and Blessed,