February 02, 2021
Ewing’s sarcoma caregiver: Finding a targeted radiation plan for my son
BY Christine Pena
In Sept. 2019, I discovered a rock-hard bump on my son Logan’s chest. The next day, an X-ray revealed a soft tissue mass on his chest. A CT scan showed two additional masses on his chest. By Oct. 2019, a biopsy confirmed a Ewing’s sarcoma diagnosis.
Logan did not show the genetic markers of Ewing’s sarcoma, but he had several gene mutations. I started researching as much as I could. I wanted to know everything I could about his diagnosis.
A week later, Logan began six rounds of chemotherapy at our local hospital. He handled chemotherapy very well. But he experienced side effects, including neutropenia, mouth soreness and fatigue.
In Jan. 2020, Logan underwent a full thoracotomy to remove the tumors from his diaphragm. During surgery, doctors discovered multiple nodules throughout his chest cavity. They performed a partial pleurectomy, along with an ablation of the visible nodules. After surgery, he was up and walking by the fifth day. And by the seventh day, he was off pain medication.
In March 2020, he underwent another surgery for a chest wall resection to remove three partial ribs. Then he received a full pleurectomy of the remaining pleura of his chest wall. Logan was amazing and kept a positive attitude. After surgery, he said, "This surgery was much easier than the last!"
Choosing targeted radiation therapy at MD Anderson
After speaking with multiple specialists, we knew it was vital for Logan to receive radiation to the tumor sites. Since the primary tumor was on his rib and several other tumors had been attached to his diaphragm, we needed a targeted radiation plan. It was important to keep his healthy tissues and organs unharmed.
That’s when we met Dr. Arnold Paulino at the MD Anderson Proton Therapy Center. Dr. Paulino took every approach to ensure that Logan’s radiation treatment plan would be the best overall.
Starting on May 12, Logan received 23 treatments of volumetric modulated arc therapy (VMAT) to his hemithorax. That was followed by seven proton therapy treatments. To minimize skin irritations from the radiation, I applied aloe vera infused with manuka honey, along with heavy amounts of ointment, to his skin. He also took a shark liver oil supplement to help reduce other side effects from radiation, such as nausea and to improve his immune system.
Logan’s radiation therapists made sure he was comfortable. They always greeted him with encouraging words and got to know him. They asked him questions to help him open up. Logan played video games and created animations to redirect his focus.
In Sept. 2020, we found out Logan is cancer-free. His lungs look great and show no damage from radiation. He can exercise and keep active like any other 10-year-old boy.
Coping with your child’s cancer treatment
My advice to other parents is to ask questions. Always look for ways to help your child through the process. As scary as it is to have a child with cancer, it is even scarier when issues arise that you are not aware of.
Communication with your child during treatment is key. Keep a care kit available for needs such as sores, rash, open wounds, fatigue or nausea. Stay prepared by speaking with your care team regularly to identify possible situations that could arise.
Try to keep your spirits up. We joke and laugh a lot. As hard as life is right now with quarantine, it’s about being together with family, and embracing the positivity that life has to offer.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
Communication with your child during treatment is key.