Pastor Reggie: Updates

November 4, 2022

Dear Legacy,

Today is Day 37 post-transplant! It is good to be home with Shara and of course our golden doodle Ruby. It is very good to be sleeping in my own bed. I’ve had a few rough days with GI issues, but for the most part I am feeling a little better and a little stronger each day.

About 3 days a week, I travel to the Cancer Clinic for labs and treatments. These typically take 4 to 6 hours each day. I am so thankful to Joe Greenhaw who has driven me and hung out with me on most of these trips. I realize I am not always good company as I’ve been known to fall asleep in the clinic chair or his car mid-sentence. Every day I am taking between 35 to 40 pills. Most of these are prophylactic meds designed to support my compromised immune system and prevent various fungal, viral, and bacterial infections. Ironically, the rest of the meds are immunity suppression, or anti-rejection drugs designed to keep my body from attacking my brother’s stem cells as they are now engrafting and beginning to produce new – hopefully cancer-free – blood, or to keep his cells from being too aggressive and attacking my healthy organs.

Every other day the doctors run their tests and then prescribe infusions of blood, fluids, minerals or new medications and doses, understanding all of these different meds impact and interact with each other. I am reminded while the scientific data is helpful and amazing, my doctors are practicing the Art of Medicine as they search for the best plan and treatment for me.

Now as I think about all the complex, interconnected systems that must all be functioning properly and in perfect harmony for a person to have health, I am reminded of Psalm 139:14, “I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.” And that verse reminds me of the main lesson God has been teaching me these days: He is “The Great Physician” and while I so appreciate and strongly believe in the wisdom and hard work of my doctors and their team, my life is exactly where it has always been in the strong, all-knowing hands of my Creator and Redeemer.

Again, we are so thankful for all of your encouragement and support. Please continue to pray that: 1) I can avoid any serious expression of Graft Versus Host Disease. 2) I can avoid catching any other life-threatening bugs or viruses. 3) Both Shara and I can remain patient and diligent in our isolation as we march toward that 100-day mark where some of the restrictions could be lifted.

Grateful and Blessed,

Reggie

October 21, 2022

Dear Legacy,

“I thank my God in all my remembrance of you.” Philippians 1:3

Reggie and I continue to be overwhelmed with gratitude by God’s provision for us along every step of this journey. We know it is your prayers that continue to carry us through each day, and some days each hour.

Reggie was released from the hospital one week ago today, but what we have come to know is that though he is no longer an “inpatient,” most days are spent at either the KU Cancer Center or KU Med Center for blood draws, transfusions, drips, and various procedures, whatever he may need while he remains in his present “no man’s land.” Though his cells are dying, and his brother’s cells have begun to engraft, they are still trying to find and feel at home in Reggie’s bone marrow. This last week, Reggie had some really rough days, but we have been repeatedly told he should begin to feel better each day over the next few weeks.

We are especially thankful for our lifelong friends, Joe and Shannon Greenhaw, who have also entered into isolation so they can support me as Reggie’s caregiver. Joe has already accompanied Reggie on many of his day trips to the cancer clinic, allowing me to continue my hip therapy and healing from my surgery. I am doing well. We are also very thankful for our sweet neighbors, Gina and Matt McBride, who have helped coordinate the wonderful meals many members of the church have provided in compliance to all the restrictive immune-compromised protocols.

Please continue to pray that: 1) Engraftment would continue to take place. 2) We would avoid any life-threatening infections. 3) We would continue to daily rest in the Lord’s strong hands.

With a very humble and grateful heart,

Shara

October 14, 2022

Dear Legacy Family,

I am writing to you from my parents’ living room with my mom, dad, and their Golden doodle Ruby Mae! It has been a miraculous couple days. On Monday October 10th, Dad was having a BRUTAL week. Nearly all the symptoms that come with chemotherapy were weighing him down. These symptoms, paired with a literal unmeasurable white blood count, were a deep valley in our family’s journey. Dad had shared with us that he was learning what it meant to truly die to his flesh and trust the Lord for the fundamental and basic provisions that we often take for granted in life. 

Tuesday and Wednesday there were moments of psychological relief as his blood count improved significantly even while he continued to battle nausea and other symptoms. Thursday at roughly 9:30am my mom got a call from Dad that he was breaking out and he needed a ride 😉 (Actually-he was officially discharged!🙌). This was a surprise for us and brought some apprehension as we were anticipating him to be in the hospital for several more days. 

I picked up Mom on Thursday afternoon, we fueled up with a Freddy’s cheeseburger and went to the hospital to receive the education and instructions for the next chapter of this journey. We have packets of homework regarding medication and regular procedures for a new normal as Dad navigates the remaining 85 days of a 100-day isolation.

On the way home we pulled into the driveway to be greeted by some dancing grandchildren (social distanced), a happy pup, a comfortable chair, a dinner cooked by a Legacy family, and a newly equipped remote home office set up by our Legacy IT team.

God is faithful and our church has showered our family with blessing! Our morale is up, phase one is crushed and conquered, but we also know there is another hard chapter that awaits.

Here is how you can continue to pray for our family:

  1. Please pray that a successful engraftment process would continue in Pastor Reggie’s body.
  2. Please pray that Pastor Reggie and Shara can adjust to an isolated rhythm with joy and discipline. There are many round trips to the clinic, medication plans to follow, and daily do’s and don’ts to lifestyle in isolation (example: no going outside, food restrictions, etc.)
  3. Please pray for our family to be wise and discerning as we care for him. We know we need to walk a careful line of offering our presence while protecting his still fragile immune system. 

Dad specifically asked me to thank YOU for your faithful prayers and many kind words and expressions of encouragement.

God bless,

Zach

September 30, 2022

Hey Church Family,
I write from my dad’s (Pastor Reggie) hospital room. I am receiving my post-game coaching from this past sermon series “Desiring the Kingdom” and we are also discussing how important the next few weeks are for our church family as we deal with some “elephants in the room.” I can report he wants you in church this Sunday 😊. 

On Thursday, September 22 my dad accompanied my mom to St. Luke’s hospital where she underwent a hip replacement. The surgery went well and she is now doing physical therapy at home. Her goal is to fully recover before dad is released from the hospital.
 
The very next day on September 23, dad checked in to the KU Medical Center and began 5 days of intense chemotherapy designed to eradicate his bone marrow and cancer. On day three, he took a fall and needed 6 stitches in his head. He has a beautiful black eye; his story was something of 4 nurses knocking him around (his sense of humor is still intact). Subsequent tests revealed a small fracture in his neck. Dad has actually had neck pain for several weeks and it is inconclusive if the neck fracture was from the fall in the hospital or an older injury. Nonetheless, he is in a neck brace for the next 8 weeks which adds some discomfort as he continues down a tough road ahead. 
 
The big win for our family is that early Wednesday morning my uncle Jack, Pastor Reggie’s brother, successfully donated 6.2 million stem cells. The goal was to harvest 2-3 million, so my uncle Jack was deemed an over achiever by medical staff and has already reminded our family of this several times 😉. Those stem cells were transplanted into dad later that afternoon. The next couple of weeks, dad will continue to recover in the hospital. The recovery will be difficult and we can expect him to battle the worst of the chemotherapy symptoms. However, our family understands and believes in the Lord’s providence and we have felt the support and prayers of our church family. Here are Pastor Reggie’s two specific prayer requests:
 
  1. Please pray that there will be a successful engraftment of Jack’s stem cells into his bone marrow.
  2. Please pray that he can avoid any other infections or complications as he rebuilds his immune system over the next 100 days.
Please also pray for physical relief, and emotional and mental fortitude. Pray for our family as we seek to stay rooted in Jesus. 
 
God Bless,Zach

September 16, 2022

Dear Legacy,

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,

Reggie

August 12, 2022

Dear Legacy,

This week, after six weeks on my new medication, I had new lab work, followed by a meeting with my oncologist and several members of his team. The lab work yielded mixed results. The good news is the medication has alleviated many of the Systemic Mastocytosis (SM) symptoms. I have re-gained about 12 pounds, and have less fatigue and G.I. distress. Also, my abnormally low red blood cell count was slightly elevated. The bad news is my liver tests were also elevated and my white blood and platelet counts have fallen to “critical levels,” leaving me extremely vulnerable to other infections, medication-related bleeds, and most concerning “waking up the Chronic Myelomonocytic Leukemia (CMML).”

In our meeting, Dr. Yacoub emphasized again that we are fighting two different cancers. He chose initially to ignore the CMML because my SM is so aggressive. But we do not want the CMML to get out of control because treating the SM symptoms has so compromised my immune system. A positive from the meeting is that my most recent bone marrow biopsy shows no sign of bone decay. This is good as SM often creates tumors on bones causing them to hollow out and then break. This is a major concern because of the lesions on my spine and hips. Dr. Yacoub informed me that I will need to have frequent bone marrow biopsies for the foreseeable future.

So, the three action points from the meeting are: 1) Instead of increasing the dosage of 100 mgs a day to the standard dosage of 200, we must now cut back to 50. Regrettably, this could cause some of the SM symptoms to return. We will monitor and adjust in six weeks. 2) I have a new bone marrow biopsy scheduled for September. 3). Dr. Yacoub is going to have the stem cell transplant team call and begin that process ASAP. It will take several months to prepare, find an acceptable donor, and recover from the procedure. The stem cell transplant is the only way to cure CMML and could possibly also resolve the SM. The good news is it will all be done in town at the KU Medical Center.

I again want to thank all of you for your prayers and countless messages of support and encouragement. Shara and I are resting at peace in the “hallow of His hands” and feeling much loved by God’s people.

Reggie

June 24, 2022

Dear Legacy,

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!
Reggie

June 10, 2022

Dear Legacy,

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,
Pastor Reggie

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