In March 2017, our lives would be forever changed. The change was supposed to be the birth of our 2nd child, Joseph, but unfortunately that was not the case. Isabella, then 3 years old, was battling a sinus infection and on antibiotics for several weeks. After returning home from school I noticed increased fatigue and vomiting and knew something was going on since the antibiotic wasn’t working. After vomiting the rest of the day, her doctor told us to go to the ER for fear of dehydration. After becoming unresponsive at about 5am, a CT scan would tell us words no parent should ever hear. “I’m sorry, we think your child has cancer, a malignant brain tumor” and requires emergency surgery immediately, she won’t survive without it. After the successful removal of the tumor, a later MRI revealed further metastatic disease in her full brain and now spine. They told us Medulloblastoma stage 3. After receiving this news and living the worst day of our lives to date, now I had to give birth to my son, with my precious girl up in ICU. This isn’t fair, it wasn’t supposed to be this way. So, at 11:04am, 9lbs and 48 hours later, my son was born, but a piece of our heart wasn’t with us. So, after being told we had to start high-dose chemotherapy immediately, we started to explore our options and have her transferred by chopper to CHOP for her continuing treatment. This evil, terrible disease not only took our normal lives but also took her ability to walk, speak, sit up, and just to be her normal smiling 3-year-old self. Here at CHOP she would receive 5 more cycles of intensive high dose chemo, 3 stem cell transplants, 33 proton radiation treatments, and 2 ½ months of intensive rehab treatments before arriving home right before her beloved Christmas after being inpatient for over 8 months, leaving our newborn son at home, missing the first 8 months of his life.
Our princess warrior turned 4 years old and we continued to cherish every moment and milestone at home. In April 2018, we learned her disease had grown more despite receiving radiation. Upon our complete disbelief and devastation, we decided to pursue clinical trials and immunotherapy, those being our only options now. How could it be, with all this progress she has made, that this is what we’re being told. From loosing most of her abilities, she can now sit up on her own, use a walker, crawl, stand while holding on, and can feed herself again, despite being full of cancer! Then we arrived here at KMF for intensive PT. What a blessing it was to learn we had discovered what would become our new family. With hopes of seeing our beautiful girl one day, walk and run on her own. She started therapy and it is lifechanging to see her continued progress every single day. She can take steps on her own and get around our home while holding on to things. Despite her still ongoing disease and very unfortunate prognosis and outcome, she wouldn’t come as far as she has without this incredible team and staff. We see their hard work and dedication in everything our girl does, and we are forever grateful to them all. They go above and beyond to make our angel laugh and smile. Although we don’t know what the next days, weeks, or months will bring and unfortunately our days are now numbered, we owe our daughters new independence, happiness, and incredible self-esteem and motivation to the entire KMF therapists and staff. You have all changed our lives. Thank you from the bottom of our hearts for making our beautiful princess warrior’s days brighter.
Michelle and Justin