Diagnosed with Leukemia at Age 3, He Finds a New Beginning After a Second Transplant Following a 10-Year Journey

Summary: In 2016, 3-year-old Lele (pseudonym) was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL). After achieving remission with chemotherapy, he later relapsed and received CAR-T therapy followed by a first related haploidentical hematopoietic stem cell transplant. The leukemia nevertheless returned again in 2022. After Lele came to Beijing GoBroad Boren Hospital, the specialist team developed an individualized treatment pathway based on his disease characteristics: chemotherapy to reduce tumor burden, CD22 CAR-T therapy, total body irradiation (TBI), and an unrelated-donor allogeneic hematopoietic stem cell transplant. The strategy brought him back into complete remission. Now, more than three years after his second transplant, Lele continues to regain his strength. The little boy who endured years of treatment is growing into an upbeat, cheerful teenager.

Lele was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in 2016, when he was only 3 years old. After three years of chemotherapy, he was able to return to school, but the disease relapsed at the end of 2020. He subsequently received CAR-T therapy and a related haploidentical stem cell transplant, yet the leukemia returned again in September 2022. At one of the family's most difficult moments, they came to Beijing GoBroad Boren Hospital. The specialist team developed a combined strategy of chemotherapy, CAR-T therapy, total body irradiation, and a second transplant. In February 2023, Lele successfully received an unrelated-donor allogeneic hematopoietic stem cell transplant and again achieved complete remission.

More than three years after the second transplant, the little boy who once faced one challenge after another has grown into a bright, cheerful teenager. Watching his son smile on stage, Lele's father quietly felt his eyes fill with tears.

Lele Meets His Donor for the First Time

One Diagnosis Ended All the Joy of That Lunar New Year

My family is originally from Anhui, and my wife and I later settled in Wuhan. Lele was born in 2013. He was a child who loved to smile and run around, and he brought us so much joy. During the 2016 Lunar New Year holiday, we went back to my wife's parents' home. Over those few days, I noticed that Lele looked pale and yellowish, had little appetite, and kept saying his legs hurt. At first, we thought he was simply tired from all the holiday activity. But his energy kept getting worse, so we quickly took him to a local children's hospital. When the blood test results came back, the pediatrician looked very concerned, strongly suspected a hematologic disorder, and told us to transfer him immediately.

That same night, we traveled overnight to a major hospital in Wuhan. After a bone marrow aspiration, immunophenotyping, fusion-gene testing, and a series of other evaluations, Lele was diagnosed in March 2016 with B-cell acute lymphoblastic leukemia, with a positive TEL-AML1 fusion. His initial risk assessment placed him in the intermediate-risk group. He had not yet turned 3.

Chemotherapy, CAR-T, Transplant - Hope and Setbacks, Again and Again

After diagnosis, Lele began treatment on the low-risk arm of the CCCG-ALL-2015 protocol. On day 33 of induction, bone marrow flow cytometry showed MRD negativity. We thought we had finally crossed the hardest hurdle. But less than two weeks later, the day-46 assessment showed residual MRD of 0.01%. His treatment was therefore adjusted to the intermediate-risk arm, and chemotherapy continued.

In May 2019, Lele finally completed treatment and stopped medication. He returned to school, made friends, and life slowly began to feel normal again. We almost believed the darkest part was behind us. Then, without warning, the disease returned. In December 2020, a routine bone marrow assessment showed relapse together with central nervous system leukemia. Lymphoblasts accounted for 2% of the bone marrow, with flow MRD at 1.5%. Even worse, MRI showed extramedullary leukemic infiltration. The news of relapse felt like being knocked all the way back to the beginning.

At the local hospital, Lele received re-induction chemotherapy and multiple lumbar punctures with intrathecal therapy until the cerebrospinal fluid became negative. In January 2021, he received CD19 CAR-T cell therapy, and his bone marrow again reached complete remission. But the doctors told us that this remission might not last and that he needed hematopoietic stem cell transplantation as soon as possible. In May 2021, Lele underwent a related haploidentical transplant, with me as his donor. After transplant, severe pulmonary infection and skin graft-versus-host disease (GVHD) followed one after another. His weight dropped from more than 50 kilograms to just over 30 kilograms, and he became painfully thin. Somehow, despite how young he was, he fought his way through. I thought that must surely be the last major test. But a little over a year later, at the end of September 2022, another bone marrow assessment showed relapse, and the extramedullary disease had returned as well. I sat on a bench in the hospital corridor with the report in my hands and could not speak for a long time. I had never felt so powerless.

With Few Options Left, We Came to Beijing: CAR-T as a Bridge to a Second Transplant

The local hospital recommended a second transplant, but by then we no longer knew what to think. Then several parents in a patient group pointed us toward another possibility: a number of children had undergone successful second transplants at Beijing GoBroad Boren Hospital. They told us that the Boren team had extensive experience with relapsed and refractory leukemia, highly individualized treatment planning, and post-transplant complication management.

We decided to try. Through a video consultation, we gave Dr. Tong Wu from the Boren transplant team a detailed account of Lele's history: poor CD19 target expression, previous CAR-T treatment and transplant, and another relapse. Dr. Wu gave us a clear recommendation, and for the first time in a long while, we could see a small path forward. Once we decided to transfer, getting to Beijing became the next challenge because travel restrictions were still very strict at the time. We were fortunate to receive help from a parent volunteer known as 'Hao's dad' from the Xiaobai Chuntian patient community. In October 2022, Lele was discharged from the Wuhan hospital. We took a train north that same afternoon and, with Hao's dad helping us through the arrangements, completed admission procedures late that night. In the early hours of the morning, Lele was admitted to Ward 12 at Beijing GoBroad Boren Hospital under Dr. Shuangyou Liu's team.

After admission, the Boren specialists carried out a comprehensive reassessment. The transplant team led by Dr. Tong Wu and Dr. Yongqiang Zhao repeatedly discussed the case with the immunotherapy team led by Dr. Shuangyou Liu and Dr. Ruifeng Hou. Taking into account Lele's poor CD19 target expression, his prior therapies, and the complexity of planning a second transplant, they developed an individualized strategy: chemotherapy to reduce disease burden, followed by CD22 CAR-T, then total body irradiation (TBI), and finally a second hematopoietic stem cell transplant.

In November 2022, Lele successfully received a CD22 CAR-T cell infusion. Follow-up assessment showed molecular remission in the bone marrow, with the residual TEL-AML1 fusion level falling to 0.020%. That created a more favorable window for the second transplant. What followed was a long, difficult wait for donor matching and the call to enter the transplant unit.

On January 29, 2023, the news finally came: Dr. Yongqiang Zhao told me that Lele could enter the transplant unit and begin preparing for transplant. The next day, Lele entered the unit and started TBI-based conditioning. Then an infection was detected. The myeloablative conditioning had already been completed, so the transplant could not simply be postponed. We were so worried that we barely slept that night. Fortunately, after antiviral treatment, the infection test turned negative the day before stem cell infusion.

On February 9, Lele successfully received allogeneic hematopoietic stem cells from an unrelated donor - a life-giving gift from someone he had never met.

His time in the transplant unit went more smoothly than we had expected. Lele had mild diarrhea but no severe infection or high fever. Platelet engraftment occurred on day 10 after infusion, and white blood cell engraftment on day 13.

GVHD, Viral Infection, and One Hurdle After Another

We knew that leaving the transplant unit was only the first step. Controlling infection and preventing and treating graft-versus-host disease (GVHD) after transplant would bring their own challenges. Fortunately, the Boren transplant team had extensive experience, and each time a problem arose, they responded quickly and precisely.

The first major complication was severe skin GVHD, with widespread peeling and redness across Lele's face and trunk. In late 2024, the GVHD worsened again, with extensive skin lesions. Dr. Tong Wu, Dr. Yongqiang Zhao, and their team promptly adjusted treatment, and the GVHD was brought under control.

At the same time, the cause of Lele's longstanding proteinuria was finally clarified. In April 2024, he was admitted again because of elevated urinary protein. The Boren team arranged a kidney biopsy and genetic testing, which confirmed X-linked Alport syndrome, an inherited kidney disorder passed through the maternal line. Once the diagnosis was clear, the transplant and nephrology teams developed a lifelong kidney-protection plan, with regular monitoring and carefully selected medication to preserve his kidney function as much as possible.

The challenges did not end there. Beginning in May 2025, Lele developed recurrent high fevers. At our local hospital, three days of anti-infective treatment would bring the fever down, but after three days at home it would return. This cycle continued for nearly a month. In June, we returned to Boren. Rather than simply treating the fever symptomatically, Dr. Yongqiang Zhao's team carried out an extensive pathogen work-up and eventually identified the cause: reactivation of human herpesvirus 6 (HHV-6). After reviewing the available evidence, Dr. Zhao recommended trying a newer antiviral medication. It was not until November 2025 that the HHV-6 testing finally became negative, bringing the six-month infection episode to an end.

Lele himself was much stronger than we had ever imagined. As he grew older, he sometimes spoke with the dry calm of a teenager who had already been through far too much. Half joking, he once said, 'Every day I get is a bonus.' Hearing a teenager say that after everything he had endured left us, as his parents, both heartbroken and incredibly proud.

After a Ten-Year Leukemia Journey, the Rainbow Finally Appears

One challenge followed another, and each time, the Boren team was there to catch us. People often ask me what left the deepest impression on us. For me, it was two things: expertise and compassion.

From a medical perspective, the transplant team led by Dr. Tong Wu and Dr. Yongqiang Zhao designed Lele's entire pathway from CAR-T to a second transplant, making each decision carefully and decisively. With such a complex case, they never dismissed a concern. They repeatedly brought the case to full-department discussions and personally reviewed the critical details. The nursing team was equally dedicated - technically skilled, but also consistently warm and caring toward Lele.

Over the years of treatment, we had nearly exhausted our family's savings and at one point faced serious financial strain. After we came to Boren, the Patient Services team learned about our situation and helped us apply for financial assistance through an Angel Fund and a transplant support program. Ms. Qiao Li also came to the ward specifically to check on us, asking what we still needed and what difficulties we were facing. When it came time to search for an unrelated donor for Lele, the team went out of their way to help. I can say without hesitation that Boren played an essential role in helping Lele reach where he is today.

By October 2024, Lele's condition had become more stable. After detailed discussions with the specialists, we were finally able to return to our home in Wuhan after a long time away.

Lele has now lived with leukemia for more than ten years. After his second transplant, the GVHD has eased to a mild level and his overall condition has improved well. We are planning for him to return to school this September.

This time, Lele was invited to take part in the 'Rainbow Project,' where he finally met the donor he had been hoping to see for so long. On stage, Lele hugged him tightly and said through tears, 'Thank you for giving me a second life. I've been waiting for so long to meet you.' His donor gently patted him on the back and answered softly. I stood beside them with a thousand things I wanted to say, but in that moment, I could not find the words.

Ten years of leukemia treatment took us from Wuhan to Beijing, from relapse after the first transplant to a second transplant at Boren that brought a new beginning. Our family lived through more dark moments than I can count. We are deeply grateful to the transplant and multidisciplinary teams at Beijing GoBroad Boren Hospital for their precise care, and for the compassion that stayed with us throughout. You helped make it possible for Lele to stand in the sunlight today.

Today, there is something I also want to say to my son: Lele, you didn't just make it through - you did better than any of us could have imagined. For the years ahead, I hope you can finally put down some of the strength and weight you have had to carry for so long, and simply grow up happy, like any other child.