We wanted to share some additional updates on Sophie’s condition, as well as the story behind how we got to where we are today. We’ve learned more over the past week of our lives than any parents should ever have to learn. Our sentiment is similar to almost every similar website: We’ve gone from “That could never happen to us” to “This is our story”.
To summarize succinctly, a little over a month ago, Sophie came down with a mild fever and severe cough. She was prescribed two rounds of antibiotics, but neither led to significant improvement. Original chest x-rays and exams also didn’t show anything too alarming; nothing more than a cold or mild infection. However, as time went on, we both became increasingly concerned, not because of concrete symptoms, but because we both knew that Sophie was not acting like our “happy, carefree sweet girl” that she had always been.
We went back to Sophie’s original pulmonologist, who referred us to a Dr. at Columbia NY-Presbyterian to perform a bronchoscopy. Prior to the procedure, he requested a last minute chest CT scan to arm him with some different information to have a more successful bronchoscopy. The night after the CT, we received the devastating news that no parents should ever have to hear; they had discovered a large tumor in Sophie’s lung that would need to be biopsied immediately to determine malignancy.
There is no way to describe how we felt at that moment, or really any moment since then. The hours of meeting with different doctors, the consults, the exams, the tests, gathering information have all been grueling, devastating, and more trying than we ever thought we’d experience in our lives. And the worst part? How to decide which doctor and institution that would give our little girl the best fighting chance she would have for this scary disease.
This past Monday (11/14/16) was Sophie’s 3rd birthday. We decided to celebrate her birthday early and threw a last minute party for her in our home that weekend. On her actual birthday, we had an multi-hour open lung biopsy done at Columbia Presbyterian with the most phenomenal, kind surgeon in the world.
The pathology reports confirmed that Sophie has an extremely rare childhood cancer called pleuropulmonary blastoma (PPB). So rare in fact, there are only a few dozen diagnoses per year around the world. After what felt like years, and thanks to the amazing behind the scenes help of some extraordinary people, we found a team of doctors at Memorial Sloan Kettering Cancer Center (MSKCC) who have a tremendous amount of experience with rare cancers and have worked on several successful PPB cases. The overall plan is to treat with chemotherapy, followed by surgery to remove the tumor, followed by additional chemotherapy.
Sophie’s treatment began yesterday (11/17/16) at MSKCC pediatric ICU where her port for chemo was inserted, and her first chemotherapy treatment was administered. We are currently still in the ICU, but hope to be discharged next week.
While we know that yesterday was the first day of one of the most difficult journeys we will hopefully ever have to face, we also know that it was the first day of Sophie’s recovery.
To all our friends, family, organizations and even strangers who have stepped up to help with everything included but not limited to: organized prayers, anonymous donations, meal arrangements, much needed hot coffee sitting at our front door before leaving for the hospital, couriers bringing items back and forth from our home, working connections to get us in with the best doctors, someone I’ve never met creating this website, phone calls, voicemails, texts, emails, and so many other countless and unbelievable acts of kindness, we truly cannot thank you enough.
We will continue to provide updates as we know more about Sophie’s treatment plan and recovery. To stay updated, please feel free to sign up for automatic updates through the webpage that has been created to help her fight this terrible disease.