Overcoming Embryonal Rhabdomyosarcoma

Embryonal Rhabdomyosarcoma Diagnosis and Treatment

When Stephanie, her husband Daniel and their son Declan arrived at CHRISTUS Children’s, they were welcomed by the pediatric oncology team. After a brief intake, Declan was evaluated by specialists who worked together to create an initial plan of care.

Based on the location of the lump on Declan’s right testicle, and the fact that it had changed in size and firmness, doctors were highly suspicious it was cancerous. Masses in this region are rare in children, so the team took swift action eventually leading to his diagnosis followed by prompt initiation of treatment.

Stephanie and Daniel quickly felt reassured that their son was being cared for by providers who understood not only the medical urgency of his case but also the emotional needs of families potentially facing childhood cancer.

The care team, led by Dr. Dimarys Sanchez, one of the pediatric hematologist-oncologist at CHRISTUS Children’s, moved quickly. A multidisciplinary team — including radiology, general surgery and pathology — was assembled to coordinate care. Surgical excision of the mass was the first step allowing for tissue sampling and analysis to achieve a definitive diagnosis.

Everything was a blur, Stephanie recalled. You start questioning everything. ‘Did I miss something? Could I have done something differently as a parent?’ Having previously faced her own battle with multiple myeloma as an adult, Stephanie couldn’t help but wonder whether their diagnoses were somehow connected. The medical team reassured her it was not.

Declan underwent surgery the following day. The mass and the affected testicle were removed. Soon after, pathology confirmed the diagnosis: embryonal rhabdomyosarcoma, a rare and fast-growing soft tissue cancer that forms in skeletal muscle.

Embryonal rhabdomyosarcoma (ERMS) is a rare, aggressive form of soft tissue cancer that primarily affects children. Among pediatric soft tissue sarcomas, it is the most common subtype and typically develops in the head and neck, genitourinary tract or urinary tract. It often affects children younger than 6 years of age, explained Dr. Sanchez. This is an aggressive type of tumor that can spread or metastasize anywhere in the body however often patients respond well to intensive chemotherapy with or without radiation once primary tumor has been removed.

Just a few days after surgery, doctors placed a port under Declan’s skin — a small device for easier delivery of chemotherapy and other treatments.

Over the next six months, he underwent a rigorous treatment schedule, traveling back and forth to CHRISTUS Children’s for frequent infusions. Some visits lasted all day. Others required overnight stays. Declan’s grandparents were instrumental during this time, consistently stepping in to help with transportation and ensuring Declan always had someone by his side. Although the after-effects of the COVID-19 pandemic made the experience especially challenging, Stephanie said the hospital did everything possible to accommodate families and make them feel safe.

Some of the hardest days were the ones when port access proved difficult, a common challenge for young children undergoing treatment.

The team was always so patient and gentle with him, Stephanie said. Even when it took multiple tries, they never gave up, and they always made sure he felt comforted. As a parent, it could be hard to watch, but knowing how much they cared made all the difference.

Even in the toughest moments, Declan’s playful spirit never wavered. Still not even 2 years old, too young to fully understand what was happening, he stayed curious and full of life, which his mother said was a blessing during such a difficult journey.

Comprehensive Support During Embryonal Rhabdomyosarcoma Treatment

Throughout everything, the CHRISTUS Children’s pediatric hematology and oncology team made sure Declan and his family never felt alone. Everyone — from oncology nurses and infusion staff to front desk coordinators and support services — knew Declan’s name and made the family feel like more than just patients.

Simple moments, like playing games, doing crafts and finding ways to make the hospital feel a little less scary, helped bring a sense of normalcy during an otherwise overwhelming time.

Dr. Sanchez became a trusted guide and source of reassurance for the family, helping them navigate difficult decisions with honesty, clarity and a steady presence throughout his chemotherapy treatment. For Stephanie and Daniel, knowing they weren’t facing the journey alone made an enormous difference.

In Declan’s case, he was able to have a successful gross total resection of his tumor, and he responded really well to chemotherapy which was reassuring for our team and his family that he was on the road to recovery and long lasting remission from his cancer, Dr. Sanchez said.

The hospital’s Child Life Specialists also played a valuable role in supporting Declan and his older brother, Noah. Child Life Specialist Becky helped ease their fears during hospital visits, offering activities and distractions that made appointments feel less intimidating.

When Noah joined Declan for his appointments, Becky made sure he felt included, helping both brothers find small moments of childhood even during the challenges of cancer treatment.

Therapeutic play areas in the hospital’s Child Life Zone offered another important outlet. Declan and Noah could pretend to fish, build stuffed bears and create art — activities that gave them space to be kids again and helped the whole family breathe a little easier.

For Stephanie, those small acts of kindness and understanding became lasting memories during an otherwise difficult journey.

Recovery, Remission and Life After Embryonal Rhabdomyosarcoma

In September 2022, after six months of chemotherapy, Declan was officially declared cancer-free. While he continues to attend check-ups every six months, the hardest part of his experience with cancer is now behind him.

Today, Declan is a thriving 4 year old. He’s enrolled in pre-K, excited about kindergarten and spends his days full of laughter, play and sibling adventures. He also receives speech therapy at CHRISTUS Children’s to support his continued growth and development.

The journey hasn’t been easy, but the family found strength through connection. Their local cancer support community provided opportunities to meet other families navigating similar experiences, reminding them they were never alone. There’s healing in sharing your story, Stephanie said.

Stephanie’s advice to other families facing a childhood cancer diagnosis is simple: stay present and stay connected. She encourages parents to trust their instincts, ask hard questions and lean on the community around them. You don’t have to do this alone, she said. You’ll find strength you didn’t know you had, and you’ll find people, whether nurses, doctors or other parents, who are ready to walk with you every step of the way.

Declan’s story shows what’s possible with advanced pediatric cancer care, comprehensive hospital support and a dedicated oncology and hematology team. It’s also a reminder that at CHRISTUS Children’s, the people behind the medicine make all the difference.

To learn more about childhood cancer care and treatments for pediatric conditions like embryonal rhabdomyosarcoma, visit CHRISTUS Children's Cancer & Blood Disorders Clinic.