We received news yesterday that we are still trying to digest and fully understand. A blood test came back positive for anti-nephrin antibodies. This is a sign her nephrotic syndrome has come back. If left untreated the antibodies will attack her new kidney and cause irreversible damage.
Recurrence of nephrotic syndrome post-transplant is estimated to occur in 25% of children. We have a team of doctors from Phoenix Children’s, Stanford, and Boston Children’s hospital working together to support her and have agreed on a treatment plan. She will start receiving more aggressive anti-rejection medications than she is currently on. Vanessa will start on steroid medication at home. She will also receive a couple different types of infusion treatments over the next couple of months at Phoenix Children’s hospital.
We are heartbroken to hear this news but are grateful there is a treatment option. We have so much HOPE that this plan will be successful. We hope to know over the next couple of months how she is responding to the treatment.
On a brighter note, Vanessa is doing well. We recently enjoyed a little weekend getaway to Flagstaff and have been going on family hikes. Looking forward to celebrating her 4th birthday in just a few days!