Once Fighting for Her Life with Leukemia, She Is Now Five Years Post-CAR-T—and Beloved by Her Classmates

Summary: In 2021, Qiqi, still only a young child, was diagnosed with acute lymphoblastic leukemia after developing persistent high fever. Her treatment journey included severe infections, hemophagocytic syndrome, and disease relapse. After the family traveled to Beijing, Dr. Jing Pan and her team reviewed Qiqi's previous treatment history and the features of her relapse, and developed a sequential CD19/CD22 CAR-T treatment strategy. With comprehensive care throughout the process, Qiqi gradually recovered. Now, five years after CAR-T therapy, she is back at school and even dreams of becoming a doctor so she can help others one day.

In 2021, young Qiqi was diagnosed with acute lymphoblastic leukemia after developing a persistent high fever.

Five years later, she is now a third-grade elementary school student, learning and playing with her classmates and making plans for her future. It is hard to imagine that this lively, cheerful girl once went through leukemia relapse and major turning points in treatment.

At the 3rd CAR-T Cell Therapy Survivorship Conference, Qiqi's mother shared what it was like to accompany her daughter through leukemia treatment. From the shock of diagnosis, to repeated challenges during treatment, and finally the return to school, Qiqi's family never stopped looking for the next treatment opportunity. Step by step, they helped her find her way back to the childhood she deserved.

 Qiqi and her mother

One High Fever Changed an Entire Family

In October 2021, Qiqi suddenly developed a persistent high fever. At first, her mother thought it was just a common cold. The test results, however, caught the entire family off guard: acute lymphoblastic leukemia.

"We'd had a relative with leukemia before, but I never imagined it would one day happen to my own child."

On the day of diagnosis, the doctor reassured the family while explaining the current outlook for childhood leukemia: "Children often have meaningful treatment opportunities. Don't let the diagnosis frighten you before treatment has even begun."

From that day on, Qiqi and her family began a long treatment journey.

Early Treatment Brings a Life-Threatening Infection

Qiqi started chemotherapy soon after diagnosis, but the early phase of treatment was anything but smooth. During her second course, she developed a severe infection and had to be transferred urgently to the ICU. She later faced a pulmonary infection, hemophagocytic syndrome, and other critical complications, making the entire treatment course extraordinarily difficult.

"At the time, we truly didn't know whether we would ever see her wake up again." People around the family began gently preparing them for the worst. But the doctors and other patient families kept encouraging them: "Hold on a little longer."

Qiqi's mother remembers the medical team talking with them again and again, asking them not to give up too soon. After more than 30 days of treatment, Qiqi's condition finally began to stabilize. But when she left the ICU, her mother was heartbroken by how much the illness had taken from her. Qiqi's weight had fallen from more than 15 kilograms to under 10 kilograms. She could not stand and no longer recognized her parents. "It was as if she had become a baby all over again." Her mother stayed beside her every day, talking to her and playing recordings of her own voice from when she was younger.

More than 20 days later, Qiqi slowly regained awareness. "She couldn't say 'Mom,' but she kept looking at me. I knew she recognized me."

When Leukemia Relapsed, the Family Headed to Beijing

Around six months after completing treatment, Qiqi faced another major setback: the leukemia relapsed.

For a child who had already survived a critical infection and had not yet fully regained her strength, relapse made the next stage of treatment even more difficult. To make matters worse, this was during the pandemic, but Qiqi's disease could not wait. "She had already relapsed. We simply didn't have time to sit around and think." With help from other patient families and healthcare professionals, Qiqi's family began looking for another treatment option. They learned about Dr. Jing Pan's team and decided to take Qiqi to Beijing.

Travel between provinces was tightly restricted at the time, making the trip far from easy. Qiqi's family completed her discharge paperwork overnight and set off for Beijing. They stayed in close contact with the receiving hospital along the way. "As long as someone in Beijing was willing to take her, we could get there." With active coordination from the hospital, Qiqi was ultimately able to reach Dr. Pan's team and begin treatment.

CAR-T Offers New Hope After Relapse

As soon as Qiqi arrived, the medical team assessed her condition and began planning the next stage of treatment.

"I remember it so clearly. The doctors and nurses kept reassuring us, saying, 'Now that she's here, let us take care of her.'" Qiqi's mother recalls that her daughter was in a fragile condition at the time: the leukemia had relapsed, infection remained a concern, and her body was still very weak.

Taking into account the pattern of relapse, Qiqi's previous treatment, and her current condition, Dr. Jing Pan's team developed a strategy centered on sequential CD19 and CD22 CAR-T therapy. The goal was to target and clear leukemia cells while creating the best possible opportunity for durable disease control.

Throughout treatment, the medical team managed Qiqi's complex condition as a whole. They worked to control her pulmonary infection and improve her physical condition so she could proceed with therapy, while also closely monitoring treatment response and the risk of complications and addressing problems promptly when they arose.

This time, Qiqi did not need to return to the ICU because of infection and was able to complete treatment successfully.

Five Years Later, She Is Back at School

Throughout Qiqi's treatment, her parents put nearly all of their work aside so they could stay with her. Her mother even fractured her tailbone while caring for Qiqi, but still remained at the hospital. "Moms aren't superheroes. We just feel like we can't afford to fall down."

Today, five years after CAR-T therapy, Qiqi has returned to school. She studies and lives much like other children her age, and she already has a dream of her own. "I want to become a doctor and invent a needle that doesn't have to pierce the skin, so other children won't have to hurt the way I did." Her experience has also helped her understand how much her mother went through: "Mom worked so hard taking care of me. I hope she gets better and better too." From once needing help herself to now hoping she can help others in the future, Qiqi is finding her own meaning in what she has lived through.

What Qiqi's Mother Wants to Share with Other Families

1. Understand Your Child's Condition and Keep Communicating with the Medical Team

A child's condition can change throughout treatment, so parents need to actively understand their child's current health status, treatment goals, and what comes next. "Don't only wait for the doctor to tell you the result. Learn to ask questions and understand what your child is going through and what may come next." Having enough information at key decision points can help families make choices that better fit their child's situation.

2. Find a Medical Team You Can Truly Trust

Treating a hematologic disease is about much more than choosing a single regimen. Infection prevention, complication management, and long-term follow-up can all affect recovery. For a child facing a complex illness, finding an experienced, responsible medical team that can manage the full treatment journey is critically important.

3. Connect with Other Patient Families and Learn from Their Experiences

Patient and family support groups can be valuable sources of new information and different perspectives. Sometimes, simply talking with people who understand what you are going through can also make the days of treatment feel a little less difficult.

4. Stay Committed to Treatment and Keep Believing in Your Child's Recovery

When disease relapses or treatment becomes difficult, a parent's emotional state can affect the child as well. Stay committed to treatment, stay present for your child, and focus on what can be done today. That is how families can accompany children, one step at a time, toward a better future.

From the hospital ward back to the classroom, Qiqi's five-year journey shows that going through something difficult does not mean losing the future.

Every child still in treatment deserves to have a future to look forward to. We hope every family can find a treatment direction that fits their child and move forward with confidence and hope, waiting together for brighter days ahead.