How are we so lucky?
“Lots and lots of wonderful kids come into The Costas Center every day. Most of them are doing well and it is a really positive, upbeat place. Lily takes that up one or two notches,” says Christopher Hugge, MD, SLUCare physician of pediatric hematology/oncology at SSM Health Cardinal Glennon Children’s Hospital. “Seeing her makes your day a little bit better.”
"It is always great to see Lily,” adds Brittanie Shetterly, R.N. “She has a very large personality in such a tiny little body.” Lily LaMartina is a 5-year old from a large family who has spent the past two years with an extended family at SSM Health Cardinal Glennon. Now in the last year — the maintenance phase — of chemotherapy, the little redhead 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. “Glennon has been amazing. How are we so lucky?” says Anne LaMartina, Lily’s mom. Two years later, Lily returned to the hospital, this time for admission to the pediatric intensive care unit. “I don’t often see patients as sick as Lily was,” said Dr. Hugge. “She was in the midst of an overwhelming infection. Her kidneys had shut down, her lungs weren’t working well and she had pockets of infection in her skin and some of her muscles.” “Most patients who are that sick honestly don’t make it,” Dr. Hugge said. “The fact that she is now well and thriving is pretty remarkable.” 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.
“The fact that she is now well and thriving is pretty remarkable.”
Before the beginning Lily is the sixth child for Anne and 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. It may be associated with thyroid or heart disease. Lily visited SSM Health Cardinal Glennon when she was a year old for heart surgery. Her heart defects were corrected by surgeon Charles Huddleston, MD, a professor in the Department of Surgery at Saint Louis University School of Medicine. The infection arose during treatment for acute lymphoblastic leukemia. Lily began walking with a limp in 2016. Her parents first thought she had pulled a muscle. Her doctors initially thought she may have had a bone infection. The diagnosis was cancer. “Dr. Hugge came to see us every day even though her chemotherapy was on pause,” Anne says. “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.
“He just came to be with us. That is something about Glennon that you don’t get everywhere. I am now coming to the end, but it was a horrible situation. Sometimes we needed people who would just sit with us and talk. When we needed emotional support it was there.” She shakes her head while reflecting upon all the challenges Lily has faced. “And she survives it all.”
Lily probably received a dozen medications while overcoming her infections and complications, Dr. Hugge says. “She probably received at least 10 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.” Childhood cancers account for less than 1% of all cancer diagnoses but about 10,590 children under the age of 15 are diagnosed annually, according to the American Cancer Society. Cancer is second to accidental injuries as the leading causes of death in that age group. Leukemias — cancers of the blood and bone marrow — are the most common childhood cancers and account for about 30% of all cases. “We see about 60 new patients with malignant tumors each year,” Dr. Hugge says. “Some require surgery only so at any point in time we have about 30 to 40 kids receiving active therapy. About one-third of our kids are leukemia patients which equates to 15 to 20 patients a year.” There are many treatments available now for patients such as Lily, Dr. Hugge says. “In 1940, leukemia was universally fatal.
“About one-third of our kids are leukemia patients which equates to 15 to 20 patients a year.”
By 1970, there was a 50-percent chance of survival. Now the chance of survival would be 90 to 95%.” “The people at Cardinal Glennon are so smart!” Anne says. “They know what to look for, recognize the symptoms and respond quickly and appropriately.” “There was a lot of good, supportive care from the staff here at Glennon,” Dr. Hugge says. “Having such a wonderful, extensive family is always helpful, too.” Anne is thankful for Lily’s older brothers and sisters who assist in taking care of her and boosting her social development. “What a blessing they have been in loving and supporting Lily.” Early in her treatment Lily sometimes was not her usual bundle of laughter and energy. “When she was sick she was very sick,” said her nurse Brittanie, who Lily calls “Bee.”
“It is so rewarding to see kids who were so sick come back five years later.”
“It was hard to see her when she was that sick. One time she just sat on my lap and leaned against my chest for an hour. But that is one of the things I love about my job — being able to take care of them in their times of need and knowing the things I do can make them feel better. It might just be holding their hand while their IV is started,” she says. “It is so rewarding to see kids who were so sick come back five years later. You can’t tell that at one time cancer had them down and out. It makes it possible to do the hard days when you see them when they are smiling and have hair.” Lily’s good days encourage The Costas Center staff, Dr. Hugge says. “She has made the entire office her personal playground. That is how I know she is doing well — she comes in and takes over and directs people to go here and there. She loves to laugh and giggle. You definitely look forward to seeing her.” “Lily is spoiled by the staff at Glennon,” Anne says. “This place is like family to us.” Last summer Lily finally was able to go on her first family vacation to Michigan City, Indiana. “She got to swim in the water for the first time. She was wearing floaties and had a really good time,” her mother says. “There were a lot of firsts for Lily this summer.”