From Leukemia to Pancreatitis: Lesley’s long journey of victories
Lesley had leukemia when she just turned three; the diagnosis was done when she was in Africa in January 2017. She was rushed to Boston Children’s where her treatment started, continued at Vanderbilt Children’s Hospital, and ended in Africa. Lesley came twice to the US during her second year of treatment for her chemo port, once when it was clogged and finally for its removal. During her two years of chemotherapy, Lesley had several episodes of acute pancreatitis. Her chemotherapy would be held during treatment and then restarted; she had to pay back all the missed doses and she finished her treatment 2 months later than planned.
The extent of the damage of chemotherapy on her pancreas was misdiagnosed. Lesley and her parents hoped that at the end of chemotherapy her terrible pain would go away, but that wasn’t the case. Nine months after the end of chemotherapy, she had yet another episode of pancreatitis. This time, her parents had a confirmation of the damage done in Brussels and decided to come back to the United States. At Boston Children’s, Lesley and her parents understood the magnitude of her problem and planned a longer stay for Lesley in America than expected.
It has now been four years since Lesley is back in the US for her treatment. She has been brave and continued to study and had 11 surgical procedures at Cincinnati Children’s. Today, Lesley is 10 years old, and she is in 5th grade at Immaculate Heart of Mary (IHM) in Cuyahoga Falls, Ohio. She hoped to be dancing, but the unpredictability and intensity of her belly pain could not make it possible. She is, however, part of two clubs: Grace Notes (choir) and Technology (Bit Buddies).
Lesley has gone through 10 ERCPs; after the 8th ERCP, doctors advised her to have a life-changing surgery, a Total Pancreatectomy with Islet Auto-Transplantation (TPIAT) in September 2022. Her surgery was postponed a few times and was scheduled for May 2023. However, in the meantime, Lesley felt better and even though all appointments were made, Lesley decided to avoid the TPIAT in the hope as she said to be “like other children”. But Lesley is unique in her journey and after a great summer, her pain came back even worse; Lesley now wants the surgery more than ever.
The surgery will be scheduled soon; it is a major surgery that takes around 12 hours and 4 to 6 weeks recovery in and close to the hospital. She will be monitored closely for 3 months and will come back to the center to be checked. She lives close to 4 hours from the hospital and often travels to Cincinnati Children’s for consultations, different procedures and tests. Part of the procedure will involve taking Lesley’s cells that produce insulin or islets to be transferred into the liver. Lesley does not know the outcome of the surgery, whether she will have a successful transplant meaning she will be able to satisfy her needs in insulin or will need insulin. For now, her pain is making her life so difficult that she is ready for the next step.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.