Secondary Myelodysplastic Syndrome (MDS): Zamiyha’s Story

When she was 4, Zamiyha survived a rare brain tumor. Then as a young adult, with a toddler of her own, she was diagnosed with a bone marrow cancer — and she once again came to CHOP for treatment.

Zamiyha doesn’t have many memories about having cancer when she was 4. “I remember rushing back and forth to the hospital and spending holidays in the hospital,” she says.

She had been at Children’s Hospital of Philadelphia because she had been diagnosed with a very rare, aggressive brain tumor called an atypical teratoid rhabdoid tumor. Treatment included high-dose chemotherapy and infusion of her own blood-making stem cells. “To me, it felt like forever,” Zamiyha, now 23, says of being sick. “I was teased a lot. I was homeschooled most of kindergarten year.” She does have happy memories of a trip to Disney World and a camp for kids with cancer.

After treatment was done and the tumor was gone, Zamiyha had trouble processing the experience. “I used to get upset every time I told someone about my illness.” Eventually she learned to feel empowered by what she went through: “I realized I inspired people.”

The weight of big decisions

She continued to come to CHOP to be screened for any recurrence of her tumor, and for many years, everything was fine. But then near the end of high school, a bone marrow biopsy detected something problematic. Eventually it was determined she had myelodysplastic syndrome (MDS), a diagnosis of cancer that is sometimes called “pre-leukemia.” Instead of the bone marrow producing new blood cells that mature over time, MDS disrupts this process. The new blood cells never mature. The result can be anemia, infections, excessive bleeding and increased risk of developing full-blown leukemia. Zamiyha’s MDS was considered “secondary” because it was a long-term side effect of the chemotherapy she received as a child.

There was no question where to get care: “I never wanted to leave CHOP,” she says simply. She had known her doctors, Jean Belasco, MD, a brain tumor specialist, and Nancy Bunin, MD, Medical Director of the Blood and Marrow Transplant Program, for most of her life.

Her life, however, had become complex. First and foremost, she had had a son when she was 19. And now it was up to her, as a young adult, to make the decisions about her treatment.

“When it was detected, it wasn’t an emergency, but they told me it would be better to get a bone marrow transplant now rather than sometime down the line,” she says. But no cancer treatment is 100 percent certain. “When I was 4, my mother had to endure everything. As an adult, it was scary,” she admits. “I had to endure all of the information and all the ‘ifs’ and ‘maybes’ about getting the transplant done. And it would mean I would have to be away from my son.”

A difficult month in the hospital

She decided to go ahead with the bone marrow transplant, encouraged by a promising discovery: Her mother was a perfect match to be her donor. In March 2016 Zamiyha was admitted to CHOP. First she required chemotherapy, which “makes space” in the bone marrow for the new cells. The treatment was an ordeal.

“I was in so much pain,” Zamiyha says. “I just felt like an old lady. I had to call my nurse every time I had to go to the bathroom. I felt like it was never going to end, and I kept wondering why did I get sick a second time.” She was encouraged to eat and drink to stay strong, but she had a hard time holding anything down. She talked with her son using FaceTime, but she missed him terribly.

Nonetheless she has high praise for her oncologists, nurses and, in particular, her social worker, Zoe Artz, MSW, LSW: “I love her so much. She would find anything I needed.” Zamiyha spent the time talking with CHOP staff members and writing poetry — a passion of hers since she was 11.

Ultimately the transplant was successful, thanks to the compatibility of her mother’s bone marrow. After Zamiyha was discharged in April, she had to be readmitted several times for complications such as fevers and low blood pressure. But now, two years later, she’s attending community college, putting the finishing touches on a poetry manuscript, and caring for her son.

Presented by Chapman Auto StoresShe has written letters of thanks to everyone on her care team. As she puts it, “CHOP saved my life and kept me company while I was sick.”