January 8, 2010 was like any other day for the Conley family of five. After attending a basketball game at Wright State, Javan Conley drove home with his two sons in the back seat doing what boys do best, horsing around and burping. When they got home, Ethan, 8, began complaining that his stomach hurt and Javan said what many fathers might’ve said; “you shouldn’t have been forcing yourself to burp in the car!” This stomach ache was just the beginning of what would turn out to be a very frightening journey ahead for Ethan and his family.
As the evening went on, Ethan’s stomach did not get better and he spent most of the evening throwing up every half hour. The next two days Ethan started to feel a little better but was still extremely weak. Javan and Rebecca, Ethan’s mom, decided to keep him home from school that Monday to give him one more day to rest. By late afternoon Ethan began complaining about his legs hurting, but Rebecca and Javan thought that it might simply be dehydration and the fact that he had been on the couch for the last few days.
At the time, Javan was the coach of Ethan’s basketball team. That Monday evening he went to practice leaving Ethan at home with Rebecca and their other two children and told them to call if anything became worse.
“About half way through practice Rebecca called me and I could hear Ethan screaming in the background,” says Javan. “I immediately left practice and headed home. We both knew there was something wrong and that we needed to get Ethan to the hospital. Even just putting Ethan in the car was difficult because simply touching his legs gave him excruciating pain.”
Javan, Rebecca and Ethan arrived at The Soin Pediatric Trauma and Emergency Center at Dayton Children’s and explained the situation to the physicians. They immediately began taking his vitals and eventually put him on an IV drip to help with his pain. Ethan was admitted and taken up to the Almost Home unit.
“Awo is always smiling- she has the type of smile that can light up a room,” says Kate Barrett, sickle cell nurse coordinator at Dayton Children’s. However, because 12-year-old Awo suffers from sickle cell disease, she will live her entire life experiencing intense pain episodes that would make most people lose their smile.
But Awo is different. Whether she is acting, singing or playing volleyball, this active pre-teen has a bubbly personality and fun loving attitude that rubs off on everyone she comes into contact with. She has learned to overcome her disease with a positive attitude and alongside her mom is helping to pave the way for better treatment for adult sickle cell patients. It is for these reasons that she has been chosen this year as an ambassador for Dayton Children’s.
Sickle cell disease is an inherited disorder in which red blood cells (which are normally round and flexible), are sticky, hard and shaped like crescent moons. Awo’s parents, Mamle Anim and Ebere Onwudiwe knew their daughter would have sickle cell before she was born. Because Mamle and Ebere knew they were carriers of the disease, they consulted a geneticist during Mamle’s first trimester and discovered their daughter would in fact live a life with sickle cell.
“When I first found out that Awo would have sickle cell, it was somewhat depressing. Being a physician I knew exactly what this would mean for my daughter,” says Mamle. “However we were also hopeful because it was the year 2000 and I knew that medicine was only going to continue to improve.”
Janice Skinner was just like any other first-time mom; excited to welcome a new life into the world and also a little scared of what was to come. But 10 days before her first baby was born an extra level of fear was added when Janice and her husband David learned their newborn baby boy would be born with spina bifida.
Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. It occurs at the end of the first month of pregnancy when the two sides of the embryo's spine fail to join together, leaving an open area. In some cases, the spinal cord or other membranes may push through this opening in the back.
“When Justin was born, the bulge in his back looked like the yolk of a sunny-side-up egg, but it was gray,” says David.
As soon as Justin was born at Miami Valley Hospital, he was taken by the neonatal transport unit to the Regional Level III (B) Newborn Intensive Care Unit (NICU) at Dayton Children’s where he underwent his first surgery. The doctors pushed the spine back into the vertebrae and closed the hole to prevent infection and protect the spine. Because Justin also had hydrocephalus, or water on the brain, three days after his first surgery he had an operation to place a shunt in the brain. The shunt is a thin tube that helps to relieve pressure on the brain by draining and diverting extra fluid.
“When we first found out Justin would have spina bifida it was a little scary because we had no idea what it was,” says Janice. “During our time in the NICU, one of the nurses had a daughter with spina bifida. It was very comforting because she was able to set our minds at ease and let us know what to expect.”
Justin spent two weeks in the NICU recovering from his surgeries. During this time Janice and David met with a team of doctors and nurses to learn how to care for a child with spina bifida. Each of the pediatric specialists that Justin’s care would require was on site making it easy for the Skinners to manage and understand his care.
Before January 2010, Samantha Alcorn had no idea what leukemia was. Today she is all too familiar with this one little word and how it forever changed the life of her daughter Katie Hollingsworth.
Half-way through her eighth grade year, 14-year-old Katie began to develop flu-like symptoms. Thinking it might be mono Katie’s physician ordered laboratory tests which revealed an elevated white blood cell count. The doctor in the emergency room in Richmond, Indiana suspected Katie might have leukemia and after consulting with her pediatrician sent Katie to the emergency department at Dayton Children’s.
Emmett H. Broxson, Jr, MD, FAAP, a pediatric hematologist/oncologist at Dayton Children’s was consulted. When Dr. Broxson met with Katie and her family, he explained that a bone marrow aspirate and biopsy would be necessary to determine the cause of the elevated white blood cell count. Katie’s bone marrow revealed she had acute myelocytic leukemia (AML).
“It didn’t hit me at first what leukemia was. When they explained that it was cancer I couldn’t believe it” says Samantha. “My first reaction was how do you fix this? I didn’t think about what if she doesn’t get through this; I just wanted to know the steps.”
AML is a rare form of leukemia for children and is much more common in older men. Approximately 38 percent of children with leukemia have AML and it only has 40 percent survival odds.
Dr. Broxson explained treatment options for AML to Katie and her family. These included chemotherapy and possibly a bone marrow transplant. Katie’s family underwent testing to see if anyone was a possible match for a bone marrow transplant, but none of the family was a potential donor, hence only chemotherapy was planned for Katie.
“When I found out I had cancer and would have to have chemotherapy I was really scared about losing my hair,” says Katie. “I never thought what if I die. I just told myself I was going to get through this.”
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