Living life to the "Max"
Max, an energetic 5-year-old with a mischievous smile, knows virtually every nook and cranny at Children’s Memorial Hospital. And he should, as Max has spent nearly two years of his young life in the hospital. He’s been treated for a heart defect that ultimately necessitated a heart transplant, as well as cancer. But despite his challenges, Max is in most ways a normal little boy.
“Most people who meet him would never know what he’s been through,” says his dad, Jared. “He’s very smart and has a great vocabulary, and loves to draw and to play with other kids. He’s very in tune with why he needs to go to the hospital for treatments. His attitude is, ‘I’m OK. Everything is fine.’”
Max was born in a Chicago-area hospital with hypoplastic left heart syndrome, a condition in which the heart’s left side is underdeveloped. If left untreated, the defect can be fatal.
He was transported to Children’s Memorial shortly after birth, where he was treated by physicians in the hospital’s Division of Cardiology. Max spent his first seven months in the hospital and underwent a series of surgical procedures to treat the condition, but after he went into the early stages of heart failure his doctors determined that a heart transplant was necessary. To date, 150 heart transplants have been performed at the hospital since 1988.
Max’s parents were told that it could take between one month and two years for a donor heart to become available. But just two months later, Jared and Max’s mom, Liz, received the news they had been waiting to hear: a donor heart was available for their 2-year-old son.
A team of transplant surgeons in the Division of Cardiovascular-Thoracic Surgery performed the procedure on Max. After two weeks in the hospital, Max and his mom stayed for four weeks at Kohl’s House, a “home away from home” near the hospital for transplant patients and their families.
Max was placed on anti-rejection medication, and because of his suppressed immune system he needed to wear a protective mask around others to reduce the chances of developing an infection. He was hospitalized several times to treat viral infections and had problems putting on weight.
In September 2008, after Max underwent diagnostic tests, the family once again received shocking news: Max had developed non-Hodgkin lymphoma, a type of cancer that resulted from his lowered immune system, a condition that in turn was caused by the anti-rejection medication. Tumors were found in his lungs, stomach, intestines, esophagus and rectum.
“It was shocking to find that the one thing that was essentially keeping him alive also can cause cancer,” says Jared.
A portion of the tumor in his lungs was surgically removed, and Max began a course of chemotherapy to shrink the remaining tumors. After several months the tumors had shrunk enough that Max was able to end his chemotherapy treatments, although he needed steroid medication to control stomach and bowel problems that developed from the anti-rejection medication.
Through all Max’s complications and long hospitalizations, Jared and Liz have remained pleased with the multi-disciplinary care Max received from his various doctors, nurses and other professionals.
“You can’t go wrong at Children’s,” says Jared. “It’s the best place possible for kids who are sick. You get the best quality of care where the best people are.”
Jared and Liz say they’re impressed by what they’ve learned about Ann & Robert H. Lurie Children’s Hospital of Chicago, which will open in 2012. The new hospital will include 288 all-private rooms with enhanced amenities, including sleeping rooms and in-room showers for parents staying overnight, as Liz has virtually every night Max has been hospitalized.
“Better accommodations to enable parents to stay overnight will be a great advantage,” says Liz. “Max has always reacted better to everything going on around him at the hospital knowing that one of us is there and that he’s not alone.”
In addition to his parents, Max has the support of his three siblings: brother Tyler, 7; and sisters Francesca, 17; and Alyssa, 14. While Max is doing well, Jared and Liz know he will continue to face challenges. But they remain positive about Max’s future.
Says Jared, “Our hope for Max is the same as it is for his siblings: to be happy and successful and to outlive us.”
When Lurie Children’s Hospital opens, children with heart disease will benefit from the 36-room Regenstein Comprehensive Cardiac Unit, which will combine intensive care experience and technology with acute care family amenities.
Story originally appeared in the September 2009 issue of Heroes Update.