At age two, my perfect princess was attending daycare and we noticed her swelling up, so I took her to the ER and we got the news that she had Nephrotic Syndrome; we were then admitted to the hospital. Mya responded to steroids and they said it was Minimal Change Disease, but after a couple relapses we did a biopsy and it came back that she has FSGS. This rare diagnosis with no cure left me, and everyone that knows and loves Mya, confused and scared. Everything happened so fast!
After numerous blood draws and her being a hard stick, she was given PICC lines in the chest and both arms. Now, we have a port in her chest and are currently having problems accessing it. Mya’s disease has progressed over the years. At first, she would be in remission for months at a time. But now, we must go to the outpatient infusion center three times a week for albumin infusions. Today, as I write this, we are here at Joe DiMaggio children’s hospital with her brother about to get a chest x-ray in the middle of her four-hour infusion, so we can see what’s wrong with her port.
We depend on Medicaid transport and we live about 40 minutes from the hospital, so it’s a mission every time. I can’t work because she is my full-time job, and now, since it’s summer, my son joins us when possible because Medicaid transport doesn’t allow me to bring him most times. Their father has to stay home from work, which is harming us even more financially. I try to find ways to work from home, but even having the time to do that has become impossible with all the appointments and infusions.
It’s tough, but her smile keeps us going. We are currently in the process of getting a second opinion from another doctor. She has also taken other medicines, but still relapses. We recently tried Rituximab, a chemotherapy drug, but nothing in her labs has shown improvement. This other doctor is three hours away from us in Orlando, and he has a study going on that he wants to examine her for. Fingers crossed.
Together, with love, we conquer all obstacles.