Medicine delivered a sickle cell cure. So why was he struggling?

Larenz Caldwell walked into yet another room in yet another hospital. The date was June 26, 2017, but it could have been any day of his life. The beige walls and paper-covered exam table felt as familiar as his bedroom. Sick and grieving, he held out no particular hope for this appointment.

The doctor who barreled into the room looked at Larenz’s chart, at the long list of hospitalizations and blood transfusions.

He examined the skin of Larenz’s lower back, mottled and blackened with blocked blood vessels, and declared bluntly that he’d seen enough. He was going to cure Larenz’s sickle cell disease.

“I laughed in his face,” Larenz recalled. “I said, ‘I challenge you. Prove me wrong.’”

This story is the first in a series about Detroit’s sickle cell community in the gene therapy era. See more from What the Cure Doesn’t Fix here .

He had plenty of experience with doctors and knew what they could and couldn’t do. They could relieve his pain, but only ever temporarily. They could replace the blood in his veins, but his body would never stop forming c-shaped, or “sickled,” blood cells that would jam his blood vessels, wreaking havoc on every system in his body. Eighteen years of living with sickle cell disease, and being raised by someone with it, taught him that.

Larenz was wrong. He would be cured. The damaged skin on his lower back, where his pain lived, would fall away, replaced by unblemished skin which he likened to a newborn’s.

Larenz was also right. Even a cure couldn’t wipe away 18 years of pain and hospitalizations in a medical system that has long failed to provide adequate care for sickle cell patients , most of whom are Black. After his body stopped forming sickled blood cells, he would still have to figure out who he was and what the hell just happened.

Editor’s note: This story includes discussion of mental health struggles and suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org .

The hardest decision

Nineteen years earlier, in the summer of 1998, Lawrence Caldwell knew something was wrong as soon as he walked into his wife Kristal’s hospital room in Detroit.

Sickled blood cells are stiff and inflexible, which can lead to traffic jams in the circulatory system. These blockages, known as sickle cell crises, are extremely painful and can cause organ damage or death. Patients in crisis are often hospitalized, sometimes for weeks, while they’re monitored and treated with heavy-duty IV painkillers and, in some cases, blood transfusions. Kristal’s crises were so frequent they were part of the couple’s routine.

At 29, Kristal understood pain more deeply than most people ever would, but this time, “she looked terrified, like she saw a ghost,” Lawrence recalled. “I sat there like, ‘What’s the problem, what’s the problem?’”

Kristal was pregnant. The couple had taken a chance they’d forgone for years. The cause of sickle cell disease is simple — a lone mutation in the body’s genetic recipe for blood. Lawrence had sickle cell trait, and Kristal had the full-blown disease. That meant their child had a 50% chance of being born with SCD and living with the same agony that shaped Kristal’s life.

Kristal worried that Lawrence would react badly to the news, but he was overjoyed. He hadn’t realized how much he wanted a child until they had one on the way.

Kristal, though, was wracked with uncertainty. She was used to making medical decisions, but this one was especially isolating. She couldn’t consult the most affected person — her child.

In her journal, she combed her life for signs from God and weighed advice from her doctors, who told her the pregnancy could worsen her disease, if not kill her. Genetic tests soon showed that the child would have sickle cell disease. On the day the results arrived, she went to a movie, talked with her parents and stayed up until 4 a.m., praying and journaling about what she called “the hardest choice I have ever had to make.”

She never stopped wondering about the implications of her choice, but soon enough she was picking out maternity outfits.

Months before the baby arrived, the couple settled on a name. Lawrence didn’t want a “Jr.,” so Kristal suggested Larenz. Father and son’s names would sound similar, and Lawrence happened to be a fan of the actor Larenz Tate. They kept the name to themselves for a while, a secret that belonged to their new family alone.

Larenz Kristopher Caldwell was born in Detroit in February 1999. Shortly after his first breaths, Kristal went into a sickle cell crisis.

First symptoms and ‘grins’

The first symptoms of sickle cell disease typically don’t appear until months after birth. Larenz was healthy, but doctors didn’t want to separate him from Kristal. The hospital was his home for the first 10 days of his life.

Once Kristal recovered, the family enjoyed a stint of normalcy. Then, at 10 months old, Larenz began to have long crying spells. When his hands and feet swelled up a few days before Christmas, his parents rushed him to the hospital. It was his first sickle cell crisis.

Drawing on her own DIY pain management experience, Kristal ran warm water over a washcloth and draped it over his head. Eventually, his pain subsided and a few smiles broke through his cries. Kristal caught a few on camera and pasted them into his infant scrapbook under the heading “Grins.” For the child of a sickle cell “warrior,” as Kristal liked to be known, even a first hospitalization was routine.

Pain is a hallmark of SCD, and every crisis is a tutorial in what triggers pain and what helps it. Hospitalizations aren’t just agonizing, but are too often a lesson in the racism of a medical system that doubts Black people’s pain . Many come to expect skepticism from doctors unfamiliar with the nuances of managing the disease — even though it’s the most common inherited blood disorder in the U.S. , affecting more than 100,000 Americans.

Kristal was eager to share her hard-won tricks for navigating life with the disease: How Larenz should advocate for himself without sounding hysterical, how to calm pain through distraction — hot water bottles, puzzles, knitting, movies.

She did not panic when, as a second-grader, Larenz began to eat toilet paper.

Pica, or the consumption of non-food items like socks or dirt, is common among pediatric sickle cell patients , perhaps because of nutritional deficiencies caused by the premature breakdown of red sickled blood cells.

Kristal humored Larenz when he insisted that the family purchase only AngelSoft two-ply because of its flavor. When he lingered in the bathroom with the door closed, she would karate chop it open as if she were in an action movie.

“I can still see the blue bathroom,” Larenz said. “She’s like, ‘Stop eating that, dinner’s almost ready.’”

Larenz recounts this story with a smile, and in a sense pica was the least serious medical complication he faced as a child. There were spells of anorexia and excruciating bouts of priapism — prolonged, painful erections that occur even before puberty. After he was hospitalized with gallstones, his gallbladder was removed when he was in fourth grade.

Larenz’s eyes were often deeply jaundiced — ”glowing” yellow, as he puts it. Kristal coached him to be upfront with his peers about his disease.

But with Kristal’s illness, work and the relentless nature of Larenz’s disease, she and Lawrence couldn’t afford to be helicopter parents. Larenz was in third grade when he spent his first night alone in a hospital, an experience he recalls as “effing terrifying.” “She’s like, ‘I’m sorry babe, I will not be staying here with you tonight. This is something you have to learn.’ But my mom was there in the morning, she brought me breakfast.”

When he was 7, Lawrence took him to a Cub Scout camp in suburban Detroit, where they played baseball and ate cafeteria-style meals with other families. After one day, with a rainstorm threatening, Lawrence drove them home early, worried that the shifting weather would send Larenz into a pain crisis. Larenz protested; he wanted to stay with his friends. He was hospitalized within a week.

These days, Larenz often says he “didn’t have a childhood.” When he watches family videos that Lawrence shot on an old camcorder, he’s almost surprised to realize how much life happened between crises.

There were the raucous family parties on Christmas Eve (Kristal always made pound cake). There was Larenz in a kid fashion show at the mall, adorable and so nervous that he had to be led onto the stage. There was T-ball and Black History Month concerts at preschool, where the kids danced on stage to “Stomp” by Kirk Franklin. There were snow angels and bikes with training wheels and ornate jack-o’-lanterns on Halloween.

But Larenz’s memories from the time are dominated by the lessons he learned from a hospital bed. “I know my relative average hematocrit levels, liver enzyme, blood type.”

In 2013, at age 12, Larenz was hospitalized eight times. He weighed barely more than 100 pounds and took daily morphine doses large enough to knock out most adults. His body had adapted to the medicine, and even those high doses failed to relieve his pain.

Each crisis exhausted the family further, and new medical bills seemed to arrive weekly. Lawrence struggled to keep up. He took a job with the West Virginia Division of Corrections, and the family moved to the small, almost entirely white town of Martinsburg.

Doctors at the hospital there told them they’d only seen one case of sickle cell before. Larenz and Kristal found themselves walking their doctors through the basics of the disease, with mixed results.

“They used to have to ambulance me to D.C. … because nobody was comfortable treating a child with such high doses of painkillers,” Larenz recalled.

During one of Larenz’s D.C. hospitalizations, Kristal flipped her phone camera around and recorded a video diary for Lawrence. For weeks, Larenz had been immobilized by a combination of pain and painkillers. Now he was on his feet, grinning impishly and trying to stuff handfuls of his mom’s hair into a striped, Dr. Seuss-style top hat.

“You’re making a rat’s nest!” Kristal cries in mock protest.

“I’ll wear it better,” he shoots back, grabbing the hat from her head.

As he rearranges her hair with a series of practiced moves, mother and son consider their images on the phone screen with eerily similar expressions.

“I’m glad he’s back to kind of normal,” Kristal says to the camera.

The world at arm’s length

Normalcy was getting harder to come by for Larenz as he entered high school in West Virginia. Not for lack of trying.

“I was determined that if I was never going to be in school like a regular person, I was going to be in every club,” he said. “Say yes to everything, be on every committee. I went to prom all four years. I helped set up, I decorated … I made sure that every time I wasn’t in the hospital, I was around people.”

Everyone knew him at school — the ebullient, smart teacher’s pet who was never at a loss for words. He’d known he was gay since before he had those words, and he surrounded himself with queer friends.

Still, he kept the world at arm’s length, burying his mental health struggles deep within him.

He told none of his new classmates about his attempt to overdose on pain medications in eighth grade. He recalls taking an entire bottle, unaware of how high his tolerance had become. “I went to sleep for not even an hour,” he recalled. “I was so pissed.”

Looking back, he can think of plenty of reasons he put up walls around his inner life.

Even though he was out to his friends, he hadn’t yet come out to his family, and he was still grappling with social stigma and feelings of alienation from his own body, an insidious result of the episodes of priapism throughout his childhood.

He also felt boxed in by the role of perfect patient his parents expected him to play. Stretched thin by countless nights in the hospital and an endless stream of medical bills, they didn’t have bandwidth for his mental health struggles.

Medical records from a hospitalization around that time show that Lawrence refused to let a clinician ask Larenz about his “self-harm ideation.”

Lawrence, too, was grasping for an elusive normalcy.

“The focus of everything in life at that time was sickle cell, sickle cell,” he recalled. “He’s having a crisis, she’s having a crisis. That’s when I started developing signs of depression.”

In retrospect, Larenz sees how his dad’s struggles made it hard to fully recognize what his son was dealing with.

“I wasn’t allowed to be not normal in any other ways.” he said. “My mental health problems couldn’t have been clearer, but I couldn’t have anything else wrong with my health other than sickle cell.”

Stress is a well-known trigger for sickle cell crises, and Larenz believes that ignoring his mental health struggles was both a cause and effect of his worsening illness. In 2016, during his junior year, he was hospitalized 10 times, a personal record, and missed more than half of the school year.

‘You’re gonna be fine’

The previous year, Kristal and Lawrence drove to Johns Hopkins University in Baltimore to learn more about stem cell transplants for sickle cell disease. Kristal had known for years that transplants could cure sickle cell, but she’d put it out of her mind because the process was said to be risky and grueling.

She’d begun to reconsider as Larenz’s disease spun out of control in West Virginia. Lawrence joked that the two of them should have a bed reserved at the hospital, since at least one of them seemed to be there at all times.

It was summer, a good time of year for sickle cell patients, whose symptoms often flare up in cold weather. Kristal criss-crossed the campus, taking tests and talking to doctors. She was in her element absorbing new information and chatting with other “warriors” who’d come to learn more about transplants.

She wore Lawrence out. He was resting in an empty lobby when his phone rang.

It was Kristal, and she was in a rare panic. Her ankles had swollen to several times their usual size.

Back in West Virginia, doctors told her her kidneys were failing. She’d need daily dialysis.

The diagnosis gave new urgency to the idea of a transplant.

“I’m thinking it could cure Kristal,” Lawrence recalled. But Kristal had different ideas.

“Eventually we had a conversation, and she said, ‘It’s too late for me,’” he said. “I said, ‘No, it’s not. It’s not too late for you.’ She said, ‘Let’s just make sure we can get Larenz cured.’ So we just started going full speed ahead.”

Facing what they had heard were astronomical costs of transplants, they took a gamble. While Larenz finished high school in West Virginia, Lawrence moved to Nashville to take a job as a probation officer. Vanderbilt University had a transplant center, which they hoped would accept Lawrence’s new in-state health insurance plan.

Kristal’s parents made trips to West Virginia to support Kristal and Larenz. But Larenz was infuriated by the new arrangement. He felt abandoned by his dad and overwhelmed by the stress of caring for his mother, caring for himself and completing his senior year.

“We did dialysis in our living room. I had to hook her up, make sure her prescription was prepared right, open the new pack for the dialysis machine, put it on there, make sure it snaps in right, take her blood pressure, take her weight, start it, wait five minutes, take her blood pressure and weight again. And then we’d just sit down for two hours until it’s done.

“And I still had to go to school.”

Two weeks before graduation, Kristal called Lawrence in Tennessee. Larenz was in a crisis. Kristal and her mother were at the hospital, writing and sending graduation announcements to family members.

“I said, ‘I’ll be home soon to pack up,’” Lawrence recalled. “‘You all start packing up the house. I got the place. Got the insurance. Vanderbilt’s here. It’s all good.’”

By the time he arrived home, Larenz was back in school. But now Kristal was in the hospital.

When he reached her bedside, Kristal was half-delirious with pain. Doctors said her liver was failing. A nurse mentioned hospice care, but that didn’t make sense to Lawrence. Kristal was hospitalized all the time, and she always came home. He and her parents got permission from the medical staff to bring Kristal to the ceremony in a wheelchair.

Graduation day was May 31. The day before, Kristal took another turn for the worse, and her doctors insisted on a meeting to discuss hospice care. The family agreed, and they gathered at the hospital. The only person missing was Larenz, who was at school taking final exams, fulfilling the last requirements he’d need to walk across the stage.

As they waited for the hospice staff, Kristal rocked back and forth in pain, her eyes closed.

“I said to Kristal, ‘Do you hear me? Do you hear me?’ She said, ‘Mhm,’ but her eyes were closed. I said, ‘Open those pretty eyes for me.’ I’m sitting on the side of the bed. She opened them.”

The whites of her eyes had turned brown.

The hospice meeting never happened. Larenz was at school when Kristal died of multiple organ failure, a result of years of poor oxygen flow to her organs and toxic treatments. She was 48.

The next day, Larenz walked across the stage holding a framed photo of Kristal. Every teacher in the school lined up to give him a hug.

“I remember I walked off stage, and as soon as I hit my seat I started bawling. My contact fell out, that’s how hard I was crying. I was like, ‘Everybody’s looking at you.’”

He had learned all too well from Kristal that any amount of pain can be navigated. “I caught my contact, I spit in it and I put it right back in my eye. ‘You’re gonna be fine.’”

A new low

Less than a month later, Larenz walked into an exam room at Vanderbilt University Medical Center for a transplant consultation, which Kristal had arranged for both of them. This was when the doctor told Larenz bluntly that his sickle cell would be cured. He was skeptical, but willing. The appointment launched a yearlong approval process to enroll in a clinical trial.

Tests showed that Lawrence and Larenz’s blood types were similar enough that Lawrence could be the donor for the stem cell transplant.

Lawrence was determined to fulfill Kristal’s wish that Larenz get a transplant. “There wasn’t a doubt,” he said. “That’s my child. I brought him here into this.”

As they waited for space to open up in the clinical trial, Larenz enrolled at West Virginia University, where he says he split his time between a hospital bed and student parties.

That October, he wrote a letter to his family coming out as gay.

“I think I’ve always known but don’t like disappointing people, especially you guys,” he wrote. “I know it may take some time for you to get used to but this is me. This year has taught me a lot of things and the most important one is that life is too short.”

In February, just after his birthday, he got sicker than he’d ever been.

“I got up for my class and I went to get dressed and bam, I’m on the floor,” he recalled. “I couldn’t crawl to my door, so I called my friend that lives across the hall like, ‘I need you to come in here and I need you to call an ambulance.’ I had to get carried out on a stretcher to the hospital literally right across the parking lot. And that hospital did not know how to treat sickle cell, for real for real.”

Half-blind with pain, infuriated that the doctors, who seemed to know nothing about sickle cell, wouldn’t prescribe additional painkillers, he yelled at the hospital staff, demanding to see a manager. Instead, “I was put on a 48-hour psych hold,” he said. “They tied me down.”

Larenz was eventually released from the psychiatric ward and admitted to the hospital. A friend brought him a birthday cake. Despondent, pumped full of the heavy-duty painkillers that doctors had finally agreed to prescribe, he fell asleep with a bite of cake still in his mouth. Before he was discharged more than a week later, doctors added a diagnosis of depression to the usual “sickle cell disease with crisis.”

Alarmed by the ordeal, Larenz’s aunt pushed him to leave school and return to her house in Southfield, where he seemed to only get sicker. Months passed before doctors in Detroit figured out that he’d contracted C-diff, a debilitating infection, likely at the hospital in West Virginia.

A birthday

Kristal taught Larenz to advocate for himself, knowing that pain is invisible to everyone but the sufferer.

Over time, though, his pain did leave an unmistakable mark. Blackened, dying skin began to climb his lower back, where his pain lived. As his transplant date neared, the necrosis reached his shoulder blades, forming a dark, marbled pattern where his fragile and misshapen blood cells had failed to deliver oxygen.

The transplant would replace those blood cells with healthy ones; it would erase his body’s recipe for red blood cells and replace it with Lawrence’s. This recipe, encoded in DNA and housed in stem cells, guides the creation of new blood cells.

A stem cell transplant swaps one person’s blood stem cells for another’s. The procedure is also known as a bone marrow transplant, because that’s where these indispensable cells live.

Kristal was a teenager when the first stem cell transplant for sickle cell disease was completed in 1984 on an 8-year-old girl with leukemia and sickle cell. Doctors targeted the leukemia with the transplant and were surprised when it also cured her sickle cell.

That patient lived into adulthood , but the procedure was viewed as too experimental and dangerous for most patients. For years, the survival rate was only 80% .

Even a successful transplant would require chemotherapy to destroy the native stem cells and make way for their replacements, a treatment that can result in misery, infertility and deadly infections.

Infections drove the death rate during the early decades of transplants. Many people with sickle cell know someone, or know of someone, who died during a transplant. Fear about the procedure remains widespread in the sickle cell community, even after the disease-free survival rate rose closer to 95% .

In October 2018, Larenz traveled to Nashville to sign the final paperwork and begin preparations for the transplant. The drug company, Global Blood Therapeutics, paid for everything. Lawrence hadn’t needed to move to Nashville, after all.

Larenz felt as numb to the planned transplant as Lawrence was undaunted. He knew he should feel something — optimism, fear. Years later, he’d feel slightly wronged by the disassociation he experienced. Yes, he’d signed the papers, but he’d lost his sense of agency, too exhausted by grief and illness to truly embrace a decision.

The researchers behind the clinical trial aimed to show that they could cure sickle cell using less chemo and fewer perfectly matched donors.

For decades, transplants were only considered feasible if the patient was lucky enough to have a willing donor with a closely matching genetic profile, typically a sibling. Without a close genetic match, the body would reject the stem cells, leaving the traumatized patient back at square one.

To avoid infection, Larenz had to stay in the hospital for three months. The chemo, while milder than the standard cocktail, still made Larenz deeply ill, and his hair fell out.

On the day of the transplant, Larenz and his dad both wore T-shirts. Lawrence’s said, “Pain is weakness leaving the body.” Larenz wore his favorite patient uniform, a dark-blue tee that read, “We don’t know how strong we are until being strong is the only choice. Sickle Cell Awareness.”

Through an IV, the dark-red bag full of Lawrence’s blood stem cells trickled into Larenz’s vein. The nursing staff called it his second birthday. When a nurse offered to take a photograph, Larenz’s smile didn’t quite reach his jaundiced eyes.

According to the countdown on the whiteboard next to Larenz’s bed, the transplant took place on Day 0 — Nov. 8, 2018. On Day 2, Larenz woke up in his hospital bed and looked at Lawrence.

“The first thing I noticed was his eyes. They were bright, and they were bright white,” Lawrence recalled. “And I said, ‘Oh, my God.’”

On Day 3, Larenz’s back darkened further, the fine marble pattern replaced by a sea of dying skin. Alarmed, his doctor ordered a biopsy, fearing it could be a sign of a potentially deadly complication where a recipient’s body rejects the donated stem cells.

The skin went to a deep brown, then almost black. Then it fell away piece by piece in 3-inch scales that stood out against the white hospital sheets. Larenz was terrified, then astonished to find the scales replaced by new skin.

His body was in fact embracing Lawrence’s genetic recipe for blood. Healthy, resilient, lozenge-shaped red blood cells flooded into areas like the skin of his lower back, which had been all but cut off from his circulatory system.

Tests showed that Larenz’s own DNA was no longer present in his blood stem cells. There was now zero chance that his red blood cells could sickle.

He was cured. He was terrified. On Feb. 20, after more than three months in the hospital, he was discharged. As he walked through the hospital doors, his wariness bordered on dread. Even before Kristal’s death, he’d assumed that sickle cell would eventually kill him, too.

In a perverse act of resilience, his mind spun that certainty into a sense of invincibility: If sickle cell was going to kill him, he didn’t have to worry about anything else. Now that psychological amulet was gone.

“I was scared of not knowing how I was going to die. That comfort was taken away from me,” he said. “I had irrational fears, like I could fall down the stairs, I could eat the wrong piece of lettuce. Or somebody could sneeze. I didn’t have an immune system at that time and I was just really frail.”

Larenz was also lucky. Five of the 70 people in his clinical trial died of infections. The transplant failed for another eight — all of them under 18 — who would still have sickle cell even after undergoing the brutal, protracted procedure.

By medical standards, though, this was a resounding success. The authors of the study noted that the patient survival rate of 94% was actually higher than comparable survival rates for sickle cell patients in general. They argued that their method was far cheaper and easier to perform than the cutting-edge gene therapies that made headlines last year when the U.S. Food and Drug Administration approved their use for sickle cell disease.

Like gene therapy, Larenz’s transplant was designed to make the procedure more accessible, though it received almost no media attention. The authors, including the doctor who’d promise to cure Larenz, called their version a “readily available curative therapy for most adults.” A prominent transplant doctor not affiliated with the study called the results “outstanding and encouraging” and suggested that the method could expand access to transplants not only in rich countries such as the U.S. but also in Africa, where the vast majority of global sickle cell patients live.

Larenz returned to Michigan to recover, and his health improved steadily. He measured progress by the length of his newly grown hair. At nine months, it was long enough to braid. At one year, it was long enough to pick into an Afro.

Each time he took a selfie to mark these milestones, the hair on his upper lip grew darker. His voice deepened. At 19, he was going through a second puberty.

Physical development is often delayed in people with sickle cell disease. Their shortage of red blood cells, or anemia, requires the heart to work much harder. Many patients can’t consume enough calories to make up for the lost energy.

Now, with a full complement of healthy red blood cells, Larenz’s body was speeding ahead, making up for lost time.

What the cure can’t fix

The history of cures mostly belongs to magic and religion, not medicine. The New Testament is full of accounts of Jesus wiping away blindness or paralysis, leaving sufferers with a blank slate of perfect health.

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But the small contingent of sickle cell patients who’ve been cured — perhaps 2,000 out of the millions alive today — tend to view the cure not as a miracle but as an important step in a long healing process that all patients, cured or not, must undertake.

“I consider myself still to be a sickle cell warrior, because the battle for me hasn’t ended. I’m still dealing with it mentally,” Victoria Gray, who in 2017 became the first person to be effectively cured of sickle cell disease through new gene editing techniques, told a panel of advocates earlier this year.

For years, sickle cell advocates have argued that mental health care is a keystone of high-quality care. The clinical trial that cured Larenz didn’t measure mental health outcomes. His experience offers evidence, nonetheless, of the emotional burden that many sickle cell patients carry.

A year after his transplant, Larenz was driving back to college when he found himself sobbing and pulling onto the shoulder of a highway in Ohio.

“I had a panic attack because I realized I left my pill bag,” he said. “I had driven like four hours, and I was about to turn back.”

He hadn’t needed medication for sickle cell since his transplant, but after 18 years of chronic pain his body registered every twinge and ache as a sign of the disease’s return.

He liked to keep his old bag of pills on hand, just in case, but now he’d forgotten it. After a few minutes of reasoning with himself, he managed to calm down enough to keep going without the pills.

This was a step forward — he would throw out the old medications the next time he returned home. But Larenz had a long race to run to stay ahead of his trauma, one he might never finish.

When West Virginia University closed because of the pandemic in 2020, Larenz decided to come back to Detroit for good.

He lived with family and spent a lot of time at the gym, marveling at his newfound physical energy. He took community college classes and went to therapy, though probably not as often as he should have.

He couldn’t shake his sense of isolation. He desperately wanted to talk about what he’d been through, but he struggled to do it. Anyway, people didn’t seem to want to talk about sickle cell.

Elders at his mother’s church in Detroit were eager to celebrate a cure they had prayed for, leaving him ashamed to admit he was still struggling. Family members, exhausted by years of grief and worry, seemed eager to put sickle cell in the rearview mirror. When he mentioned his journey to friends, they complained that the conversation had turned “dark.”

Larenz couldn’t bring himself to reach out to old connections in Detroit’s sickle cell community, many of whom had known Kristal. He was haunted by survivor’s guilt and by a feeling that without symptoms, he no longer belonged.

By contrast, Larenz’s yearly checkups at Vanderbilt “felt like coming home,” he said. In November 2023, five years after his transplant, he and Lawrence drove to Nashville, where Vanderbilt is located, stopping on the way to see family. Larenz had long harbored anger at his father for moving away when Kristal was in such bad health. As they drove south, his resentment softened, tempered by gratitude for Lawrence’s stem cell donation.

At the hospital, Larenz felt at ease. He knew every hallway on the transplant ward where he’d spent three precarious months. The 23 vials of blood he had to give for testing felt less like a chore than a chance to flex his expertise as a patient.

These days, Larenz wears his fashion like armor, layering himself in carefully coordinated fabrics and jewelry. But for this visit, he was back in the faded blue sickle cell awareness T-shirt he’d worn on Day 0. He sat on a paper-covered table just down the hall from where he’d laughed at the doctor who promised a cure.

“What is my hemoglobin?” he sang, sounding like a game show host getting ready to reveal the grand prize.

Over 19 years and hundreds of medical appointments, his hemoglobin levels consistently hovered around 8 grams per deciliter, dipping lower during crises. His sickled blood cells broke down faster than his body could replace them.

Now his hemoglobin was 15.1, at the high end of the range for a healthy adult.

Larenz applauded, bending over in feigned shock.

Then: “What about mental health? What’s going on there?” the nurse asked. The air seemed to leave the room.

Larenz rolled his eyes. “It’s crap,” he said, then added quickly: “No, it’s not crap, it’s better now.”

Larenz was taking an antidepressant but admitted he was no longer seeing a therapist. He’d spent the summer seeing a rotating cast of telehealth counselors and given up, tired of starting his story from the beginning every couple of weeks. He’d struggled to find a Black therapist in the Detroit area who’d take his insurance. Money was tight. He promised to keep trying.

As the appointment ended, the nurse told him he was now considered a “survivor.” With sickle cell disease behind him, he needed to focus on, as she put it, “making sure you’re able to adjust and kind of get back in the hang of things in society after your new birthday — the transplant.”

She congratulated him and stood up to go, her hand held out to shake. Larenz stood up too, but extended both arms for a hug. They fumbled the handshake and laughed awkwardly. Larenz’s brief, comfortable return to his role as a patient was over.

Fast-forward almost a year, to this summer. Larenz, still not in therapy, still struggling to work through his grief and trauma, sat down to rewatch Lawrence’s old home videos. The first video was taken a few days after he was born. Lawrence tours the family’s new one-story bungalow, past the blue bathroom and into a nursery that still needs decorating. ”This is where you’re going to grow up,” he tells his newborn son.

As Larenz watched the video and the ones that follow it — the baby in the food-splattered high chair, the toddler holding his mother’s hands as he learns to walk, the kindergartner playing in a first piano recital — his father’s words seemed to arrive from across an unbridgeable distance.

“That’s a different person,” Larenz said. “I just don’t feel connected to that kid.”

Larenz sometimes fantasizes that the transplant replaced all his DNA, not just his blood stem cells. He imagines himself made completely new, as if the cure severed a thread that connected him to the child whose mother had to teach him to sleep alone in a hospital.

It’s this new person speaking when Larenz looks up from the home movie and says, again, “I didn’t have a childhood.”

But the cure didn’t change who he is any more than it could reach back through time to change the sickled blood cells running through that little boy’s veins. It didn’t change the fact that he was still struggling to pay for his college education. That he still felt lost without his mom — his biggest supporter, the person who understood him best.

The cure didn’t change the fact that he still had a lot of healing to do.

On a hot July night, Larenz pulled a car out of the garage behind the relative’s house where he was staying. He closed the overhead door, put on glasses and gloves, and pulled a glass bottle out of the recycling bin.

He hurled it at the wall of the garage and it bounced back, unbroken. He picked it up and slammed it down. It exploded with a pop against the concrete floor, sending glass skittering into the corners.

“After seven years, I think I’m finally in the anger stage of grief,” he said later, reflecting on that explosion. “I don’t know which one comes after that. I’m not angry she died, I’m angry she’s not here.”

He emptied the bin. An one-gallon bottle of vodka shattered on the first impact. A heavy-bottomed bottle of tequila broke into pieces. He felt strong.

Breathless and sweaty, he began to sweep up the glass shards, each one sharp enough to draw blood. He put everything in the garage back in its place, almost exactly where it had been before. It took a long time.

Join Outlier Media at the 2024 Sickle Cell Matters Walk on Sept. 14 , where we will showcase reporting and portraits from What the Cure Doesn’t Fix . Stop by our tent for snacks, to take a break and to say hello.

Medicine delivered a sickle cell cure. So why was he struggling? · Outlier Media