It was just after New Years 2012 when Benson started slowing down and showing a distended tummy. He was usually a very busy, energetic four-and-a-half-year-old. At first we thought he was just bloated, but later in the week he showed some very obvious signs of swelling.
We took him to the doctor’s office the following morning with an abdominal x-ray. It did not show much, so he was set up for an ultrasound later that day. Within an hour after leaving the first appointment, we got a call canceling the ultrasound and setting us up for an appointment with another pediatrician in the clinic. The lab work had given a clear indication as to what was going on.
For as shocking as this diagnosis was, somehow the stars aligned. The new doctor we met with had just finished a fellowship in pediatric nephrology prior to coming to our clinic, and she was amazing. Having a few nurses in the family, we were able to home hospitalize him, and our doctor called to check in morning and night. Benson was put on high doses of steroids and went into remission within a week. Unfortunately, he relapsed two more times and CellCept was initiated. This cycle has continued three times, and he has only been off medications for a total of seven months since the initial diagnosis.
The worst part has been the emotional and physical side effects from the high doses of steroids. When he went back to school after his second cycle of relapses, many of his classmates didn’t recognize him due to his facial swelling and weight gain. Benson has shown incredible maturity over the past five years with the doctor’s visits, lab draws, diet restrictions, and taking scheduled medications throughout the day. Despite this disease and its obstacles, he continues to excel at the top of his class in school and has become a very talented young athlete.
We’re grateful that he’s been able to manage this disease with medications, despite some of the awful side effects. Sometimes we forget he has this disease, and sometimes it consumes us—and that’s okay. The future is still very unknown, and that is scary as we approach our third attempt at discontinuing medications this spring.
Thank you to all our family, friends, doctors and NephCure for the continuing support as we move forward and pray for a cure.