February 24, 2021
MD Anderson helped my son through a pediatric rhabdomyosarcoma diagnosis
BY Amanda Hack
When my son, Sawyer, was just two years old, we started to notice that he had swelling on the left side of his face. I saw what looked like an abscessed tooth and thought it was just his 2-year molars coming in. After trips to the pediatric dentist and oral surgeon led to a biopsy, we learned he had embryonal rhabdomyosarcoma. This meant that there was a tumor on Sawyer’s left jawbone.
Sawyer’s pediatrician recommended we go directly to MD Anderson. Because the tumor was inoperable and quickly growing, Sawyer’s care team recommended proton therapy and chemotherapy. Proton therapy was able to target the tumor in Sawyer’s jaw and spare sensitive tissue such as his eyes and ears.
Starting treatment for rhabdomyosarcoma
In November 2016, Sawyer’s care team began a 43-week chemotherapy treatment plan at MD Anderson Children’s Cancer Hospital. Mid-way through chemotherapy, Sawyer began 28 proton therapy treatments that occurred simultaneously. His radiation oncologist, Dr. Mary Frances McAleer, and the staff at the Proton Therapy Center were remarkable. Before the COVID-19 pandemic, we would stop in to say hi to his nurses, Leo Flores and Yvette Rosenthal during follow-up visits. Child life specialist Laura Oncale helped Sawyer keep his mind off treatment. Leo worked on a painting of Sawyer’s favorite Disney Cars character each day of his treatment. This made the experience a positive one that he will remember.
Sawyer also received four blood transfusions to help elevate his red blood cell count. This made the proton treatments more effective. He responded well, and his energy came soaring back after each transfusion.
Helping Sawyer through side effects of chemotherapy and proton therapy
The hardest part about proton therapy for Sawyer were the side effects. The radiation caused mouth sores and some skin irritations on his face. We struggled finding foods he would tolerate. We were able to keep his calories up by feeding him his favorite snacks and frozen treats.
Sawyer stayed relatively healthy during the entire process. So, we were able to minimize the overnight stays and inpatient infusions. We were happy to isolate him at home during this time because it kept him healthy. He never missed an infusion due to illness or side effects.
He did experience some peripheral neuropathy, causing a foot drop, which can occur from nerve damage during chemotherapy. Physical therapy helped with that. Physical therapist Rachel Jarrouge worked with Sawyer once a week to improve his balance and muscle coordination. Sawyer loved going to physical therapy because he got to run around and play games with Ms. Rachel. He has not had any long-term physical side effects to his mobility, and the nerves in his foot regrew quickly once he finished chemotherapy.
During chemotherapy, Sawyer experienced some vomiting, nausea and constipation. We handled these with prescription medication and at-home remedies. Sawyer’s care team, led by Dr. Douglas Harrison, prescribed a portable bag of fluids for him to wear home for 24 hours at a time to help with dehydration. The bag of fluids and pump were too big for him to carry, so we propped it up by his bed at night. The nurses taught me how to safely remove the needle and IV tubing from his port at home the following day. This at-home hydration solution worked well for us and helped Sawyer with his digestion. This kept us out of the hospital and enabled Sawyer to enjoy being at home with his family and pets.
Thriving after rhabdomyosarcoma treatment
On Sept. 29, 2020, we got the good news that Sawyer is still cancer-free. We are thankful that he was diagnosed quickly, treated aggressively and strategically, and that we live in driving distance to a world-renowned cancer hospital.
Sawyer is now in first grade and growing tall. We are grateful for the treatment he received at MD Anderson, which was vital in protecting his mental and physical abilities. We will always remind him that he beat cancer when he was just three years old.
We have the privilege to stay involved in the childhood cancer community through volunteer work. I recommend families take any help they can from their community. Do not turn down the free help. We are grateful to be able to give back. Because we know that we are one of the lucky ones and will never take that for granted.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
We are grateful to be able to give back.