Dad Cancer-free After ‘Extremely Rare’ Stem Cell Match with Daughter
| Butch King counts his blessings every day.
First, there’s his growing family, with wife Debbie, their four children, 12 grandkids and soon-to-be seven great-grandkids.
Then, there’s his role as a deacon in the Catholic Church and a passel of friends in the faith. Not mention his lifetime of civil service in the Air Force and U.S. Postal Service.
But this Thanksgiving, as King sits down to dinner with his family, one blessing will undoubtedly rise to the top: the blessing of being cancer-free.
It all started in early 2017, when the Sherwood resident went to the doctor for a knee injury. When his blood work showed hemoglobin numbers lower than normal, his doctor wasn’t overly concerned. Hemoglobin is the protein that carries oxygen in the red blood cells, and low numbers can be caused by something as simple as an iron deficiency.
A Rare Diagnosis
One month later, when his numbers hadn’t improved, King, 64, was referred to a Little Rock hematologist and diagnosed with a rare, hybrid disease known as myelodysplastic/myeloproliferative neoplasm-unclassifiable (MDS/MPN) in which the bone marrow overproduces unhealthy blood cells.
In some patients, MDS/MPN ultimately progresses to acute leukemia.
King’s hematologist referred him to Appalanaidu Sasapu, M.D., a hematologist oncologist with the UAMS Stem Cell Transplantation and Cellular Therapy Program, Arkansas’ only adult stem cell transplant program.
After reviewing his case, Sasapu recommended King undergo aggressive chemotherapy and an allogeneic stem cell transplant. Allogeneic transplants involve the transplantation of stem cells obtained from a donor and are used to treat patients with lymphomas, leukemias and other blood disorders.
Sasapu serves as assistant professor in the UAMS College of Medicine Division of Hematology Oncology.
To receive this treatment, King immediately faced two hurdles: He had to be matched with a stem cell donor and needed to transfer to a different facility due to restrictions with his private health insurance plan.
At Sasapu’s recommendation, King and his wife traveled to Barnes Jewish Hospital in St. Louis for a transplant evaluation.
Setbacks
“We went to St. Louis with the hope of being accepted for a transplant. Unfortunately, that wasn’t the case,” King said.
Providers at the St. Louis hospital told King he was too high risk for transplant due to prior health concerns, including a triple heart bypass he underwent in 2000.
Paula Draeger prepares to donate stem cells to your father.
Before their determination, however, they requested the names of blood relatives to be tested as potential stem cells donors. Among those submitted were King’s sister, brother and two of the couple’s four children, including their youngest daughter, Paula Draeger.
Undeterred, the couple traveled back to Arkansas where King soon turned 65 and his Medicare plan kicked in.
Around this same time, they also received good news from Barnes Jewish Hospital. The test results for King’s potential stem cell donors were complete, and they were thrilled to discover that Draeger was a perfect match.
“It was our prayer that a match would be found, whoever that might be. I never thought it would be me,” Draeger said.
Brothers and sisters have a one-in-four chance of matching their siblings due to the genetic material they inherit from each parent. For another relative, including a child, to match is extremely rare.
“We don’t know how frequently a child is found to be a perfect match for their parent, but it is highly unlikely. The fact that Paula was a perfect match for her dad was something that could not have been anticipated,” said Muthu Veeraputhiran, M.D., hematologist/oncologist and director of the UAMS Stem Cell Transplantation and Cellular Therapy Program.
Shortly afterward, King was informed that for Medicare to cover a transplant, MDS/MPN patients were required to enroll in a clinical trial.
Unfortunately, his condition is very rare and there were no available trials for which he qualified at UAMS.
Clinical trials are research studies in which patients help doctors determine the effectiveness of new treatments for diseases, including cancer. The UAMS Winthrop P. Rockefeller Cancer Institute maintains about 250 active clinical trials at any given time and includes both national trials and trials solely conducted with UAMS patients.
There is no guarantee that participating in a clinical trial will benefit every patient. However, those who participate play a vital role in cancer research that can potentially benefit many patients in the future.
A Second Opinion
With another potential roadblock ahead, King determined that his best course of action was to seek an opinion from doctors at the University of Oklahoma Stephenson Cancer Center in Oklahoma City.
There they heard a similar refrain.
“We went to Oklahoma, where we were once again told that my health conditions made me too high risk for a stem cell transplant,” King said. However, the center did have a clinical trial for which he qualified.
The catch was that he had to make multiple trips to Oklahoma to participate.
“We weighed our options, and at first decided not to enroll in the trial. The amount of travel and the distance from our home were more than we could commit to doing,” King said.
However, in October 2018, circumstances changed and King signed up for the trial, which began Nov. 5. From then through March 2019, the couple made the 340-mile drive to Oklahoma City multiple times for tests and office visits. While there they resubmitted the names of potential donors – including Draeger – for a second round of testing.
Muthu Veeraputhiran, M.D., (right) and members of the transplant team visit with Paula Draeger (left) in her dad’s hospital room.
While Draeger’s test reaffirmed her as a perfect match, the clinical trial proved to be inconsequential for King’s health and the couple returned home to Arkansas once again.
Then, everything changed.
After returning to UAMS in March 2019, Sasapu told King that his MDS/MPN had progressed to acute myeloid leukemia (AML). Without the transplant now, his chances of survival were estimated at only 30%.
While this news was grave, it did have a silver lining. Stem cell transplants for AML are fully covered by Medicare, so this new diagnosis finally gave King the ability to move forward with the long-awaited procedure.
Ironically, King’s private insurance had switched to a new carrier and now also covered UAMS as a transplant facility.
“Our team was fully aware of the risks associated with Mr. King’s health and made sure he understood everything that would be involved. He was extremely motivated and willing to accept the risks associated with such a serious procedure. We customized a transplant regimen that Mr. King could safely undergo with his underlying lung and heart conditions,” said Veeraputhiran, who took over as King’s transplant physician.
Veeraputhiran added that the UAMS team is extremely vigilant in ensuring all patients receive the highest quality, personalized care for their disease.
Lifesaving Donation
Two years and two months after her father was diagnosed with MDS/MPN, Draeger began preparations to donate her stem cells for what the family hoped would be a life-saving transplant.
The process started over the weekend of July 27-28 with Draeger making twice-daily visits to the UAMS Cancer Institute’s Infusion Clinic 4 for shots to stimulate her stem cell production.
While undergoing chemotheraphy, Butch King (right) enjoys a lighthearted moment with his wife, Debbie, (center), and daughter Paula Draeger. King was declared cancer-free but has one more year of maintenance therapy to complete.
The following Monday, a port was placed near her collar bone and she was hooked up to an apheresis machine through which her blood was removed, the stem cells were separated and the blood was returned to her body. No anesthesia is required for the procedure and its side effects are few.
“The process to donate stem cells isn’t hard or painful. I would encourage anyone who has the opportunity to be a donor, to do it. The impact you can have and the hope you can give to a family is well worth it,” Draeger said.
While Draeger was completing her part of the process, King waited in his room at UAMS Medical Center, where he was being prepped to receive the stem cells via IV soon afterward.
Results
On the ninth day after the stem cells were administered, his white blood cells began increasing, indicating that the transplant was taking effect.
“We know the transplant is working when the white blood cell count goes up soon after the transplant,” Veeraputhiran said.
King was discharged on day 13 of his hospital stay and allowed to return home to Sherwood.
“Since we live less than 20 minutes away, we got to go home. If we had lived further away, we would have had to stay close to the hospital for the first 100 days in case he developed a fever or infection,” Debbie King said.
Thankfully that never happened, and King’s condition continued to improve.
On Nov. 7, the family celebrated the milestone of reaching 100 days post-transplant, as well as King’s news of being declared cancer free.
“The first 100 days following a transplant are the most precarious, where the risk of infection and rejection are highest. For a patient to be doing well 100 days after a transplant, particularly given the high-risk nature of his leukemia and other health conditions, is a significant achievement and one we love to celebrate,” said Veeraputhiran, who serves as an associate professor in the UAMS College of Medicine Division of Hematology Oncology.
Blessings
With one more year of chemotherapy ahead of him, King can finally see the light at the end of a long and winding tunnel.
“We were told by one of the nurses that we needed to keep the faith, take it one day at a time and trust God to get us through. That’s exactly how we’ve dealt with this. I still have good days and bad days, but we count our blessings every day,” King said.
The couple sings the praises of the entire UAMS Stem Cell Transplantation and Cellular Therapy team, from the nurses in Infusion Clinic 4 and the E7 wing of the hospital to the doctors, administrative staff and apheresis staff where Paula’s donation took place.
“Everyone works so well together. They are all in different locations, but their communication is outstanding. I have witnessed the nurses respond to emergency situations with incredible expertise. Their knowledge of each patient is remarkable,” Debbie King said.
With the couple now in the process of applying to become volunteers in the Cancer Institute, they hope soon to use their experience as a way of giving hope to others going through a similar challenge.
“We have an extended family of other patients at UAMS. We’ve been blessed to share their lives and hear their stories. It’s awesome knowing you can reach out and touch someone else’s life because you’ve been there too,” he said.