First grader presses on after life-changing diagnosis

Evelyn Rue’s son, Nelson, 7, enjoys many of the same things as other children his age. He plays soccer with friends, runs a lot, rides his bike, and loves using his virtual reality headset. Rue has to put a limit on her son’s activities, however, due to a serious condition he has that affects the small airways inside his lungs.

Nelson Andrade

The condition, called bronchiolitis obliterans — sometimes called “popcorn lung” — is a rare, chronic disease that results in the obstruction of these airways due to scarring. The condition usually worsens over time and there is no cure.

Nelson was 11 months old when he developed a fever of about 102 degrees and a cough. Initially, Rue, who also has two daughters, was not overly concerned, thinking that perhaps her son had an ear infection.

“He was my third child,” she said. “I wasn’t a rookie with fevers. But there was something about this that made me take him to the emergency room.”

The medical staff at South Shore Hospital ran tests and thought that Nelson would probably be heading home until one doctor checked his oximeter and noticed that when the infant fell asleep, his oxygen levels dropped. The doctor decided to admit Nelson for observation. “It saved his life,” Rue said.

It turned out that Nelson had adenovirus, which Rue said can attack a patient’s eyes, respiratory system, or intestines. In Nelson’s case, it attacked his respiratory system. The mother and son took a med-flight to Boston Children’s Hospital, where Nelson spent seven days in the intensive care unit and was provided with much needed oxygen. During his week in the hospital, he spent two days on a lung bypass machine in order to allow his lungs to rest.

Following his release, Nelson was susceptible to pneumonia and went through a period of multiple admissions to Children’s. She learned to advocate for Nelson and his needs, telling doctors, “Something’s wrong with my son. I’m not leaving here until you figure it out.”

Doctors found that Nelson was aspirating some of his food and beverages into his airways, which was causing the pneumonia, and put a feeding tube into his stomach. Less than a year later, following a CAT scan, they diagnosed him with bronchiolitis obliterans.

Although hearing the diagnosis was frightening, Rue set to work doing as much research as she could about the disease and compiling a list of questions for doctors. Nelson has not gone to Children’s due to pneumonia; instead he now goes for monthly treatments. Every four weeks he arrives at the hospital’s CAT/CR, an ambulatory infusion center. He spends two days in a row for six to eight hours at a time receiving Intravenous Immunoglobulin (IVIG) infusions. The IVIG is infusing antibodies from blood donors into Nelson’s veins.

“It helps him,” Rue said. “It slows the progression of the disease. He has not had any hospital stays.”

She sees the difference the treatments are making for Nelson, who becomes tired, has little energy, and loses his appetite as the end of each four-week cycle approaches.

Rue moved to Canton from Rockland four years ago because she wanted to be closer to the city and she wanted a community with a good school system. Nelson enrolled in the Rodman Early Childhood Program, where nurse Bailey Hewit quickly became a trusted family support and friend. “I still call her,” Rue said. “She’s my go-to person.”

Nelson is now in first grade at the Hansen School, where his sister attends fourth grade. They are both fully remote. A tutor goes to Rue’s home each morning to work with Nelson, and each afternoon he attends class online. Rue’s goal is to have both children back in school for in-person learning in September.

‘They’re the most amazing people,” Rue said of the faculty and staff at the Hansen. “When I need stuff or I have a question about anything, they are the ones that help me. The principal, “Mr. B.” (David Brauninger), is the best person. They’re amazing.”

In addition to his IVIG treatment, Nelson was at Children’s for two surgeries this week. One was to have a feeding tube placed in his stomach and the other was to have a port replaced. He will need additional surgery in the future. Rue occasionally posts updates on Nelson’s condition on her Facebook page and has heard from community members. “People will reach out to see if I need anything,” she said.

Recently, a woman sent her a message and sent some money via Venmo to help with the cost of driving back and forth to the hospital. Another woman provided a basket of toys for Nelson to play with during his infusions, and Cooking with Aprons provided dinner for the family. Rue said that Mary Buckley, co-director of the Canton Food Pantry, checks in with the family and has provided gift cards and other needed items. Rue is grateful for all of the support as she cares for her family.

“It’s hard. It’s life-changing,” she said. “He was born perfectly healthy. I have my good days, I have my bad days. I stopped working to take care of him. For me, the most important thing is to make sure he has the longest and best life. I’m going to dedicate myself to him.”

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Posted by Mary Ann Price on Feb 4 2022. Filed under Features. Both comments and pings are currently closed.