Editor's Note
Primitive myxoid mesenchymal tumor of infancy (PMMTI) is a rare soft tissue tumor that occurs in infants and young children, mainly in the soft tissues and limbs of the trunk, head and neck area, with obvious invasiveness, but less metastases.
The disease was first reported in 2006 and there are not many cases at home and abroad. The most effective treatment for PMMTI is surgery, but if the resection is incomplete, the recurrence rate is high.
The following is the narration of a mother of a child with PMMTI on January 20, 2021.
The following is from the MD Anderson Cancer Center, which has ranked first in the field of cancer treatment in the United States for many years, and is translated and edited by the U.S.-China Jia and the cancer prevention and treatment science team.
Sudden onset of malignant disease
When my son Charlie was eight months old, I noticed that his legs had become weak. We took him to the hospital emergency department and found a large tumor pressing on his spinal cord, causing him to be "paralyzed" in the lower body.
Two days later, Charlie underwent emergency tumor removal surgery in hopes of preserving his leg function. Postoperative pathological biopsy is diagnosed by the infant's original mucoid mesophyllous tumor (PMMTI), a very rare and predisposing sarcoma in infants.
Knowing that Charlie needed proton therapy, we contacted several proton therapy centers across the country and sent his medical records. Through phone communication, we discussed their treatment plans for Charlie separately with each center.
MD Anderson was chosen for proton therapy
Charlie's situation is complicated because a protective layer called a myelin sheath has not yet formed around his spinal cord. This means that the choice of radiation dose and location is critical, and if something goes wrong it could leave him completely paralyzed and lose the chance of spinal cord regeneration.
After thinking and comparing, we finally chose to treat at MD Anderson because of its reputation for oncology treatment and its proximity to our home in New Orleans. Another reason is that Dr. Arnold Paulino, a radiologist at MD Anderson, was cautious and very friendly when talking about how many doses to give to save Charlie's nerve function.
When we arrived at MD Anderson Proton Therapy Center, we felt the friendliness of the staff and nurses. As soon as they arrived at the hospital, they already knew Charlie's name and prepared toys for him to play with. As you can see, they really like Charlie.
Problems encountered during treatment
After the surgery, Charlie underwent chemotherapy and proton therapy. To prevent infection, we rinse Charlie's mouth with a special mouthwash and often flush the central venous catheter for chemotherapy.
Proton therapy
Charlie needs to take a sedative every day before doing proton therapy. So I had to get up at 2:30 a.m. to feed him the last bottle of milk before fasting. Nurses Leo Flores and Yvette Rosenthal were also very kind and always let my baby wake up naturally and comfortably from anesthesia.
Around the fourth week of proton therapy, Charlie developed a skin allergy and we applied him some ointment and protected the skin with a bandage. Although the skin burns looked painful, Charlie didn't seem to care too much.
Charlie wakes up every morning looking forward to meeting Laura Oncale, a child life specialist, as she always greets him in the hallway with toys. So as soon as they met, Charli clenched his fists in excitement and screamed.
After 28 treatments, Charli finally completed proton therapy in October 2019.
chemotherapy
During chemotherapy, Charlie experienced side effects such as loss of appetite, fatigue, and constipation. During the course of treatment, he also developed symptoms of intestinal nerve damage, so it was necessary to take laxatives every day. The scariest and toughest thing was that he had sepsis, but we all survived.
On December 9, 2019, little Charlie completed chemotherapy.
Our current situation
We are grateful that Charlie improved his athletic abilities after completing proton therapy and chemotherapy. Because one of the things we were most worried about during the whole process was the fear that he would be completely paralyzed by radiation, but thanks to the doctors at MD Anderson, it didn't turn out that way.
Charlie is now two years old and a year after her last treatment. And he still needs physical therapy three times a week near our house.
Although he had partial paralysis in his lower body, it was much better than the weakness of his lower limbs before treatment. Now he can walk well with the recoil, sometimes even running. We hope that one day he will be able to walk independently.
Find companions and stay grateful
We are very happy to see Charlie grow up healthy into a smart little child. Although sometimes it is not good to see him still has a disability, I have learned to accept it and found joy in life.
In addition, we created our first PMMTI support group on social networking sites, and in the process we received the support of many peers and the satisfaction of our hearts. Because communicating with people who are going through the same experience can be a great comfort and support.
Always remember: treatment will end and life will be better.
bibliography
MD Anderson Cancer Center official website