June 24, 2022
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!
June 10, 2022
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,
May 20, 2022
As many of you know, I have been struggling for several months with some diverse, seemingly unrelated health issues. After several weeks of testing, CT-scans, biopsies and a pet-scan, we met yesterday for the first time with an oncologist who ordered more tests and blood work. Next week I have a colonoscopy, endoscopy and another biopsy scheduled. We were hoping yesterday would give us some clarity about our diagnosis, prognosis and plan of action, but once again my family and I find ourselves in God’s waiting room. It is a place I do not particularly like, but also a place where many times in my past God has powerfully revealed Himself and taught me incredibly important life-lessons.
As of today, I know I have some kind of very rare and serious form of blood cancer. If my doctor’s suspicions are confirmed, it is incurable. However, new and very promising treatments that minimize its symptoms and manage its progress have been developed even in the last two years. While I greatly appreciate all the medical advances and the incredible professionalism and personal care we have seen in our medical team, we know my life and health is right where it has always been in the hand of our Lord and Savior who is the Great Physician.
For the next few weeks, until I have a better understanding of what treatments will look like and how I am going to feel, I am trying some reduced hours to continue handling all my leadership and staff management responsibilities. However, I have asked several members of our staff – all of whom are great Bible Students and great communicators – to fill the pulpit for me for the next few weeks. Interestingly, the last few weeks as I’ve reflected on all the things I feel I would have to do, and say to my family and Legacy if I knew for certain my time on earth was short, I believe God has given me three very specific sermons series or studies which I plan on preaching at the beginning of next year.
For now, I would ask every member and friend of Legacy to be faithful in your prayers and encouragement of our young preachers. I would also ask each of you to pray specifically three things for me and my family. First, pray in full faith for my healing, but not that our will but that God’s will would be done. Second, pray for God to provide wisdom and skill to all the medical professionals that will be ministering to me and my family. Thirdly, pray that me and my family would rest in the Lord, and both grow strong spiritually and glorify God in this trial and upon the platform for witness which He has allowed into our lives at this time.
Grateful and Blessed,Pastor Reggie