Lily is the sixth child of Anne and her husband Jay. Lily’s complex medical history began in December of 2012, at the 20th week of pregnancy, when an ultrasound exam found a major heart defect. There also was a 95 percent probability of Down syndrome, a genetic disorder that results from abnormal cell division early in fetal development. It causes a distinct facial appearance, intellectual disability and developmental delays, and may be associated with thyroid or heart disease. When Lily was a year old, she visited SSM Health Cardinal Glennon Children’s Hospital to have her heart defects corrected by SLUCare cardiothoracic surgeon Charles Huddleston, MD.
Two years later, in 2016, Lily began walking with a limp. Her parents first thought she had pulled a muscle. She was evaluated for a bone infection, but she was soon diagnosed with cancer, specifically Acute Lymphoblastic Leukemia. An infection that arose during treatment for her leukemia led to her admission to the Pediatric Intensive Care Unit. “She probably received at least ten medications as part of her chemotherapy. We had to modify her chemotherapy at first to allow her immune system a chance to recover. That is always scary. When you are treating something like leukemia and have a plan in place, you don’t like to deviate from the plan. I don’t often see patients as sick as Lily was,” says Christopher Hugge, MD, SLUCare physician of pediatric hematology/oncology at SSM Health Cardinal Glennon.
Lily spent weeks in the pediatric intensive care unit while undergoing kidney dialysis and breathing with ventilator assistance. She spent another eight weeks overcoming the infections and recovering her strength. “Dr. Hugge came to see us every day even though her chemotherapy was on pause,” says Anne, Lilly’s mother, “I was so frazzled. I think I asked him the same dumb questions every day and every day he acted like they were fresh questions.”
Lily finished the maintenance phase of chemotherapy in late 2018. She now confidently marches into The Costas Center for her appointments and immediately begins greeting staff members by name and chattering at them as if she is giving them directions. “Many people ask why we think Cardinal Glennon is such a special place or why we would recommend it over any other hospital,” says Anne. “There are always the obvious answers - the quality of the medical care, the intelligence of the doctors and nurses, access to technology and research, etc. But when you are actually a patient in the hospital, when you are ‘that’ frightened parent, sitting bedside to a critically ill child, you need more than ‘skilled doctors and nurses’ with ‘the latest technology’. You need intelligent and compassionate people who surround you with support, who stay late, consult with one another constantly and who often stay overnight to ensure that your child is getting anything and everything she needs in order to put up the best possible fight for her life. You need loving and caring professionals who will weep with you when things aren’t going well, and who celebrate with you when your child begins to show signs of healing. Cardinal Glennon is our family now and we can’t be thankful enough for all the donors who give generously to ensure that all children who walk through the hospital doors continue to get the best possible love and care just like our daughter.”