“This is something that you never think is going to happen to you. You wish you didn’t have to go through these things, but you do and we have been blessed with all of things that have been given to Alec at Cardinal Glennon,” says Jennifer Ingram of Washington, MO.
In May 2015 Alec Ingram, 11, was diagnosed with osteosarcoma, a cancer of the bone. Alec began chemotherapy at SSM Health Cardinal Glennon Children’s Hospital and faced a surgery that could have cost his arm. A few months later his heart failed, a side effect of chemotherapy. He was hospitalized in intensive care, in a coma, for two months and entered the operating room three times for heart surgeries. He left the hospital in a wheelchair, unable to walk due to a stroke.
This fall he returned to school, where he can engage in occasional games of kickball and tag, while wearing a backpack containing the batteries for the heart-assist pump in his chest.
“I am not able to do most of the stuff that I used to do, but I am able to do a lot — most of the time,” says Alec, a sixth-grader at Immanuel Lutheran School.
“Alec was jumping on a trampoline and broke his right arm high at the top,” Jennifer says. “We were referred to Cardinal Glennon and they found the tumor immediately.”
“Alec did pretty well through his chemotherapy,” says William Ferguson, MD, director of hematology/oncology in The Costas Center at SLUCare and SSM Health Cardinal Glennon.
Due to the tumor’s location, Alec and his family were cautioned that his arm was at risk. “He went into surgery not knowing if he would wake up with his arm,” his mother says.
David Greenberg, MD, a SLUCare surgeon at SSM Health Cardinal Glennon and assistant professor of orthopaedic surgery, removed the section of cancerous bone and replaced it with a graft during a 12-hour operation.
“The part of bone that was removed is responsible for the growth of the arm. That may be treatable with additional surgeries as Alec gets bigger,” Ferguson says.
“When your child has cancer you don’t think there could be anything worse,” Jennifer says. “Then his heart failed.”
“As a result of his chemotherapy he developed cardiomyopathy so his heart is not able to function properly,” says Saar Danon, MD, Alec’s SLUCare cardiologist in the Dorothy and Larry Dallas Heart Center.
Alec was admitted to the pediatric intensive care unit and connected to an extracorporeal membrane oxygenation machine by SLUCare physicians Andrew Fiore, MD, director of pediatric cardiothoracic surgery and Saint Louis University professor of surgery, and Charles Huddleston, MD, pediatric cardiothoracic surgeon and professor of surgery. The machine worked in place of his heart and lungs for nearly three weeks.
“Ordinarily we try to wean patients from ECMO and treat them with medications but we couldn’t do that for Alec,” says Huddleston. “We had to go to the ventricular assist device, an artificial heart. A little cord comes out of his chest and hooks to the batteries inside his backpack.”
After overcoming that challenge, in September a spot was found on Alec’s lung. “He had one small nodule from his osteosarcoma, which was removed,” Ferguson says. “He is in complete remission and we hope to keep it that way.”
As for Alec’s heart pump, “He is doing great,” Danon says. “The smaller, mobile devices are just starting to be used in children. His is working really well. Long-term, some kids who have cardiomyopathy improve over time. Some do not and require heart transplants.”
“He has overcome the stroke and is running. The assist device saved his life,” Jennifer says. “If he didn’t have great doctors he would have lost his arm. We have met some amazing people along this journey. They are friends for life. The nurses and doctors send us text messages and call to check on us. We would not be doing as well as we are without all of that support.”
Alec visits the hospital every few weeks to make sure his cancer remains in remission. “Now we are waiting to see what his heart does,” Jennifer says. “It is hard to find the good in something like this, but it makes you a better person. We definitely enjoy every day. We have faith and trust that God has a plan – we keep reminding ourselves of that.”