On September 27th, 2018 our sweet 3 year old daughter, Charlotte, was exhibiting symptoms of what we thought was her first stomach bug. That day started in the pediatrician’s office and by that night we were admitted to the hospital where a team of doctors determined Charlotte had stage 4 metastatic hepatoblastoma (a very rare pediatric liver cancer), which had spread to both lungs. Within 24 hours Charlotte was already in pre-op to immediately have a port surgically implanted in her chest so that she could start intense chemotherapy. It all happened EXTREMELY fast. Our entire life was completely changed forever in an instant.
The statistics were too bleak to read and no one at our hospital had experience treating this very rare cancer. With the help of our team, colleagues and trusted friends, we were able to find the oncologist who treats most of the difficult cases of hepatoblastoma and writes the protocol for it’s treatment. 2 weeks into this journey, we were off to see Dr. James Geller at Cincinnati Children’s Hospital. We had to leave behind our newborn son, only a few weeks old, and immediately head to Cincinnati Ohio. When my husband Kelly, myself and Charlotte checked into our Cincinnati Children's Hospital room, that became our home for every day and every night of the next 200 days straight. Luckily, our son and my parents were able to move to Cincinnati just a couple weeks after us and lived in a house that we rented.
In those 200 or so days in the hospital, Charlotte received several rounds of very hard hitting chemo, she lost her hair, she lost the ability to eat, she lost most of her new found 3 year old independence, she lost the ability to go outside or see other children, she was hooked up to multiple lines at all times in order to receive IV nutrition, medicine, blood, platelets and chemotherapy. In order to get on the liver transplant list, Charlotte had to have cancer-free lungs, therefore; she had to undergo 3 lung surgeries in those first few months. After A LOT of hard work and convincing, Charlotte was on the transplant list.
About a week after Charlotte went on the transplant list, a match came up. We were so grateful that our prayers had been answered, only to experience one of the hardest nights of the entire journey. Once Charlotte’s team opened her up for her transplant surgery, they found evidence of an early rupture of her tumor into her abdomen and decided not to give her the liver and deemed her ineligible for a liver transplant. We had to go to the PICU that night with a sweet baby who had been fighting so hard and so brave, with the incisions and wounds to heal of a transplant surgery…but with no transplanted liver. However; the pathology of what the surgeons saw that night was still inconclusive, so we waited for about 6 days until we received a miraculous early morning call from Charlotte’s oncologist. “Its going to be a BIG day guys!!!” Not only had all the pathology come back negative for cancer cells, but the team put Charlotte back on the list for a liver and a perfect match came up immediately!! Charlotte received her life saving liver transplant that night!! We then stayed in Cincinnati for almost 5 more months of transplant surgery recovery, while still getting several more rounds of chemo. In July 2019, we were able to go home to Virginia for the first time in almost 9 months. Charlotte was bald, still had a feeding tube and was still on a handful of daily meds, but we were thrilled to head home, finally.
About a year later, in the summer of 2020, Charlotte’s bloodwork started to point to a potential relapse in the lung. After scans, we saw that she had a small spot on one of her lungs and we went back to Cincinnati to have it removed. We were praying that she would not have to go through full treatment again with more hard hitting chemo, but when a second spot popped up just a month or so later, our oncologist told us, it was time to go through a whole regimen of chemotherapy again. We spent the next 8 months doing it all over again….the hospital stays, the sickness, losing her beautiful hair again, using a feeding tube again here and there…..it was extremely difficult for all of us….but, we did it…together! We rang the bell for the first time in July of 2021, signifying no more chemotherapy for our Unicorn Warrior Princess!
Since then, Charlotte has been a thriving little girl, going to dance class, excelling in school and making so many great friends! She is joyful and full of life and continues to inspire not only her family, but so many people on this planet! In February of 2023 we did have to remove one more tiny spot in her lung, but our hope and prayer is that was the LAST OF IT!! As parents of a pediatric cancer survivor, you are never free of the burden of worry and anxiety that it could come back, but we try to live every day to the fullest, do our best to make changes to the pediatric cancer world with what we have learned and remain hopeful that Charlotte is FOREVER CURED!
WATCH CHARLOTTE WOOLWINE'S FIGHTING KIDS CANCER VIDEO
