I was diagnosed with Nephrotic Syndrome at the tender age of 3. My mom pressed and pressed that something just wasn’t right. Finally, I was diagnosed at a local hospital in February of 2015. We were then transferred to CHOP here in Philadelphia, where an amazing team of doctors took amazing care of me. After Lasix and albumin infusions to help with my swelling, and being on constant steroids for a year and a half, I was then labeled steroid dependent. My mom had to make the most critical decision to take the next step in treatment. After a week of back and forth, thinking and studying these extremely scary medicines, she decided to go with a chemotherapy drug called cyclophosphamide.
I was on this medicine for 10 weeks with frequent blood tests to make sure I was handling it okay. In June, I finished my medicine with no major issues. Here we are a year later. ONE YEAR! One of the scariest days and decisions of my mom’s life was deciding our next step in hopefully getting me in remission, even if we could go a month, two months, three months, even six months — but here we are! One year ago today, we started chemotherapy for 10 weeks, and I am still going strong and still in remission! If I can make it 10 more weeks, I will have gone an entire year without medicine, and hopefully continuing to do so! I have come such a long way in this scary journey with some scary illnesses, but I have surpassed it all and fought through! I have remained such a trooper and a superhero, and my mom is so proud of me!
Stay strong and continue to fight for your child and know you’re not alone! Together we can fight this awful disease, and hopefully one day find a cure!