Pre- B cell Acute Lymphoblastic Leukemia
St. Louis Children’s Hospital
Lexi’s blonde hair is so soft and wavy. It’s hard to believe she completely lost her hair twice. Lexi has Pre-B cell Acute Lymphoblastic Leukemia which is cancer of the blood.
It was the weekend after 4th of July 2018 when Lexi started spiking a fever that wouldn’t go away. Troubling bloodwork at the pediatrician’s office that Monday, sent Lexi to St. Louis Children’s Hospital that afternoon. She has been a patient ever since.
For Lexi’s parents, being told their child had cancer was the scariest, most gut-wrenching feeling. Lexi’s parents were told that Lexi needed to start intensive chemotherapy right away. It was a shock to learn that the treatment for her Leukemia would last approximately two and a half years.
Lexi was in the hospital for two weeks upon diagnosis to get her stabilized. She needed multiple blood and platelet transfusions. She had surgery to place a port in her chest as well as a spinal tap and bone marrow biopsy to see the genetics of her specific type of Leukemia and check for cancer in her spinal fluid. She also started high doses of steroids along with her IV chemo.
Lexi’s mom ended up quitting her job at Walmart to care for Lexi full time and her dad became the family’s sole provider. Lexi would spend the next eight months in intensive weekly chemotherapy at Siteman’s oncology clinic at St. Louis Children’s. During frontline she had multiple IV and spinal tap chemotherapies and four hospital stays. One of those stays was due to complications from a serious bacterial infection that landed her in the Pediatric ICU.
Lexi entered long term maintenance in February of 2019. Treatment slows down to monthly chemo infusions in clinic and oral chemo every day at home. Maintenance is supposed to be slightly easier than frontline, but it didn’t start out that way. In February, Lexi developed a kidney stone as a side effect from chemo. They discovered it was too big to pass, so she had surgery at the end of July to remove the stone. Her body went into shock following the surgery and she spent eight days in the hospital.
Being immunosuppressed means a simple fever or common virus can be very dangerous for Lexi. This November 2019, Lexi spent five days in the hospital with Parainfluenza (which is just a form of cold virus). Luckily, she got out just in time to spend Thanksgiving at home with her family.
Lexi will finish treatment in Fall of 2020 and ring the “no more chemo” bell. She will continue with monthly labs and check-ups to make sure the cancer stays away. Once she is off treatment for five years without any issues, she will be considered cancer free.
Lexi is enjoying the freedom of maintenance and being able to get out more, instead of being cooped up in the house like during frontline. She loves to dance anytime she hears music and hopes to start dance classes when treatment is over.
How CMN Funds Lexi & Kids Like Her:
Lexi’s family feels fortunate to have the Child Life Specialists at St. Louis Children’s walk this journey with them every step of the way. They help Lexi’s parents talk to Lexi about things in a way she can understand. Having her port accessed is traumatic for Lexi, and Child Life is there to help distract her and calm her down each time. Child Life Services has been an integral part of Lexi’s cancer journey at St. Louis Children’s.