Waylon developed macrophage activation syndrome and needed a blood transfusion shortly after the injections began, but the injections kept him out of significant pain and were continued for about four years. “At that point, that’s what I cared about. I didn’t want him to hurt because he had hurt for so long while we were trying to get his medication worked out.” His rheumatologist, Dr. Terry Moore, at Saint Louis University Hospital, prescribed methotrexate, which had horrible side effects for Waylon. When tocilizumab was approved for children, Waylon starting receiving infusions every two weeks but currently needs them only once every two months. He is now in medical remission, runs track and plays on the basketball team.
Finding a New Normal
According to Ms. Wilder, the disease “has affected absolutely everything for our family. You try to find your new sense of normal, but it is constantly shifting because this is not a stagnant disease. We think we have found our baseline, and this is our new normal, but then, no, it has shifted again.” Walking to school, sitting through a movie, going to the beach are challenging, if not impossible, for Katherine and, therefore, for the family. “We constantly think, ‘OK, how is this going to work? How can we change things to make it more comfortable.’” Katherine is unable to attend school a full day, so it has been difficult for her mother to find a job that would give her the flexibility she needs for a schedule that requires taking her child out of school early or going to Boston for monthly appointments.
“There is so much that she misses out on. When she was in the process of getting diagnosed, she regressed enormously, stopped talking, stopped feeding herself, wouldn’t play with anybody. To watch that process—and not be able to help—was most difficult.”
But Katherine’s illness has also strengthened the family, Ms. Wilder says. Her two older brothers share a relationship with their sister that is incredibly supportive, she says. “They will give her the business and drive her nuts, but they couldn’t have a closer, more awesome relationship between the three of them. The boys have such an amazing understanding and awareness of life, of other kids. They have this peek behind the curtain of what people are going through that most kids and even most adults don’t get until some later point in their lives. It has made them so compassionate, so empathetic.”
