My Story

When Lucy arrived at Cardinal Glennon at midnight on August 27, 2013, the expectation on our end was that she may have had a minor stomach bug. Over the previous few day/weeks she had shown nothing to suggest she wasn’t a healthy (and chunky) little girl and the visit to the emergency room was a proactive precaution after some blood in her stool and some minor vomiting that evening. At 8:00am, we were informed that she has high risk Infant ALL (Acute Lymphoblastic Leukemia). Lucy was just a few days shy of turning 5 months old. The most pressing concerns at that time were dangerously high levels of potassium and a white blood cell count of over 500,000. Normal white blood cell count is between 10,000-30,000. After a very long day of aggressive treatment and the truly inspiring efforts of what seemed like an entire staff of nurses and doctors working with her over the first 24 hours, her potassium was successfully reduced to safe levels and her white blood cell count reduced to below 30,000. We were informed by her oncologist that, had Kenda not brought her in when she did, it was likely she would have suffered significant organ damage and may not have survived.

On August 21, 2014 Lucy took the last dose of chemotherapy in her 46 week roadmap. Some bumps in that road caused a few delays here and there, all a result of the toxic effects of chemotherapy. Despite enduring a very intense protocol which consisted of nearly constant chemotherapy for a year, much of it high dose, Lucy continued to develop and thrive! Shockingly, she never missed a developmental milestone. There were certainly times when we feared that she wouldn’t fully recover from the toxic side effects, but Lucy always bounced back. Her disease also responded well to chemotherapy and her end of  treatment bone marrow biopsy showed no evidence of disease! Just two months later, as we celebrated Lucy’s remission, “Papa”, Kenda’s Dad passed away from advanced stomach cancer. Lucy and Papa were diagnosed within a few months of each other, and we miss him terribly. As the months passed we were still grateful that Lucy’s remission and end of treatment allowed us to enjoy more “normal” holiday celebrations.

On January 22, 2015, five months after she finished treatment, we found out during a routine clinic visit that Lucy relapsed. Lucy was admitted to the hospital and treatment began immediately. Devastated doesn’t even begin to describe our feelings. Since chemotherapy failed, a bone marrow transplant was the only option for a cure for Lucy. As we watched her suffer through a four week induction block of chemotherapy (she didn’t eat, walk or talk for three weeks) we searched, begged and pleaded for another option; because the transplant process is as toxic as it gets. Our prayers were answered when Lucy was accepted in a clinical trial in at Seattle Children’s Hospital, using CAR T Cell therapy to kill her cancer cells – hopefully all of them, and forever! Our family traveled to Seattle and on March 25, 2015 Lucy underwent apherisis to collect her T cells. We are back in St. Louis waiting while scientists in Seattle reengineer Lucy’s own cells to seek and kill her cancer cells. We will return to Seattle soon for this process. Thank you for your thoughts and prayers, we are touched by them every day.