While Phillip Sanders’ journey to a cure for his sickle cell disease was ultimately successful, it was a path with peaks and valleys and struggles and challenges.
It’s beginning was relatively undramatic and took place during a conversation in October 2017 just after the conclusion of the Sickle Cell Symposium organized by the UAMS Adult Sickle Cell Clinical Program.
Sanders had applied in 2016 to a bone marrow transplant program at the National Institutes of Health and been rejected. When he was in the symposium audience, he heard a presentation from Kathryn Yarkony, Ph.D., APRN, and his hope was renewed.
Yarkony gave the symposium audience an overview of the bone marrow transplant program at Johns Hopkins University in Baltimore where she is the lead transplant coordinator.
Sanders and his mother approached Yarkony after the symposium. Yarkony asked Sanders some questions and after listening to his answers said he likely would be a strong candidate for the Johns Hopkins transplant program.
By December, he had submitted his application and medical records to the program. The following spring he was accepted and made his first trip to Baltimore for the tests and examinations to prepare him for the transplant.
Bone marrow transplants are one of the procedures used to restore stem cells. Recent advances in ‘half-matched’ bone marrow transplantation have allowed for a much broader range of donors, allowing just about any patient to be eligible for the procedure. This means a donor can be found for nearly every patient who needs a bone marrow transplant to be cured, even if the match isn’t exact. During that first time in Baltimore, Sanders’ mother was identified as his donor.
While the process cannot reverse some of the effects of the disease, it can stop its progression and just as importantly, successful transplant patients no longer experience the pain crises that disrupt their lives, often result in disability and send them into emergency departments and the hospital.
Sanders never had a pain crisis until he was 7 and didn’t have another until he was a sophomore in college.
“After that, I kept having more and more crises,” Sanders said. “I had been an athlete and in the band at UAPB. I got to march for President Obama.” He went on to earn his bachelor’s degree in social work and his master’s degree in health care administration.
“In 2016, I spent 60% of my time in the hospital,” he said. “I was more there than at home. It was confusing and discouraging. I was having pain crisis after pain crisis and was unable to keep working.”
That made his rejection for transplant discouraging, and learning about the Johns Hopkins program encouraging.
Because the chemo and radiation therapies necessary for the transplant would render him sterile, Sanders and his wife were trying to have a baby first. His son was conceived in 2018, and Sanders had delayed his transplant so he could be in Arkansas for the birth. Early in his wife’s pregnancy, Robert Brodsky, M.D., his transplant physician and the director of the Division of Hematology at Johns Hopkins, informed him that insurance wouldn’t cover it. Sanders said it wasn’t rational, but he felt like he had made a mistake and missed his chance.
“That really broke my heart,” Sanders said. “I had already met with them and done the tests and more. At the same time, my wife and I were trying to have a baby since 2015. We had that clock going with the pregnancy and the bone marrow clock running, too.”
However, Brodsky didn’t give up. He reworked the protocol for Sanders’ treatment, so Sanders could qualify for coverage, and he did. His mother also was identified as his caregiver and money had to be raised to pay for their long stay in Baltimore. On Sept. 1, he and his mother flew to Baltimore, and Sanders underwent a new round of testing and preparation. On Sept. 18, he moved into his hospital room and started receiving chemotherapy.
Chemotherapy destroys the bone marrow tissue that produces the sickled blood cells, and then non-sickling bone marrow from a matching donor replaces it. When the new bone marrow cells from the donor take hold, the new cells start producing a new immune system and new red blood cells in the patients. These red blood cells are healthy and do not cause the disease.
About 10 minutes after his last radiation treatment, the transplant from his mother began.
“You could see the bag with the stem cells in it,” Sanders said. “They put a light on it and you can see them. You can see your cure and see your life change. It’s in that bag. It’s surreal. That bag was worth more to me than any lottery.”
A surgical implant, a line or tube, already had been placed in the left side of his chest through which the bone marrow cells were placed.
Sanders remained in his hospital room for all of October, transferred to on-campus, outpatient housing at Johns Hopkins for all of November and was able to return home in December.
Although there are many risks to having a bone marrow transplant for sickle cell disease, the disease itself comes with many risks, too, like stroke, Sanders said.
“I have things I can’t turn around like bone infarctions in the bones of my legs caused by the disease,” he said. “I am going to need bone replacements some day. This transplant is helping me slow that down. I know I am going to need them one day, but I won’t have to get them next year.”
He’s looking forward to having a life as active it was when he was younger.
In addition to Johns Hopkins, Sanders credits UAMS and the UAMS Sickle Cell Clinical Program are helping him manage his medications. He said with the passing of time he is taking fewer and fewer medications. The story of his cure that began at a UAMS symposium when he had little hope is ending at UAMS with Sanders now a healthier, new father full of optimism.
“My future looks bright, brighter than it ever has been,” he said. “I am trying to get my life back to that active life I had. I will. That’s what I want.”