A little past noon Wednesday, around 50 friends, family members and hospital staff at the University of Chicago Medical Center squeezed into a chapel in a corner of the hospital’s seventh floor to celebrate the wedding of a 23-year-old patient expected to be discharged on Thanksgiving to go into hospice care. A makeshift aisle made of white tissue paper ran down the center of the chapel, bordered with electric candles. Perched between the foldable chairs facing the front of the room — too few for the weddinggoers to sit on — were small tissue boxes. Javier Rodriguez, known to his friends and family as Javi, has familial d!lated cardiomyopathy, a genetic disease that predisposes v!ctims to develop heart fa!lure at a young age. He’s had two heart transplants, one when he was 14 and another when he was 18.
He has several days, possibly weeks, left to live, his current physician, Dr. Bryan Smith, said. The day before the wedding, Rodriguez told him “he wanted his to-mbstone to say ‘husband,’” Smith said.
Hospital staff began preparing Tuesday afternoon for the wedding between Rodriguez and his girlfriend since high school, Crystal Cuevas. Rodriguez asked for a strawberry wedding cake, but no bakeries could make one on such short notice while handling Thanksgiving orders. So hospital staff baked a three-layer strawberry cake. They also decorated the chapel with silver ornaments and white balloons.
Nurses and doctors who have cared for Rodriguez arrived early and stood at the back of the room.
Family and friends filed into the front, and Rodriguez and Cuevas’ 3-month-old daughter, Leia, dressed in a white fluffy sweater and silver headband, was placed in a car seat at the front of the room.
Cuevas said she met Rodriguez through mutual friends. Both were juniors in high school at the time; she went to North-Grand High School in the Humboldt Park neighborhood, and he went to Campos High School in the West Town neighborhood. “He had this aura to him,” Cuevas said. “He walked into a room and you smelled confidence.
“He had confidence, smarts, his smile. His ears! If you see Javi, he has these little ears, and that’s everything.”
When she first met Rodriguez, he had already had his first heart transplant and was healthy, she said. About six months later, he fell s!ck again, and since then, she’s accu-mulated “hundreds of (hospital) passes.”
Dr. Valluvan Jeevanandam, who carried out Rodriguez’s second heart transplant, said that before the second procedure, Rodriguez had developed antibodies against 98 percent of all donors. Eventually, Jeevanandam said, Rodriguez was able to get the second heart “against all odds.”
As time passed, however, Rodriguez developed new antibodies. Smith, who is Rodriguez’s current physician, said Rodriguez’s condition is not strong enough for a third transplant because he’s acquired !nfect-ions and has kidney dysfu-nction.
On Saturday, Rodriguez called Cuevas while she was at work, telling her they needed to make “a family decision,” she said. After making it through the last two hours of work, she rushed to the hospital, and he explained to her his decision to go into hospice care.
“I always try to keep it together in front of him, but that day I couldn’t,” she said. “I didn’t grow up with a dad, and that’s the one thing I always wanted to give my baby girl and that’s what he wanted.”
Tuesday, Cuevas created a GoFundMe to help pay for “Javi’s end of life celebration.”
“Now that it’s come to this point, we’re trying to fit in as many pictures and videos and all of that as possible, so that she’ll never think that she didn’t have a dad,” Cuevas said.
As the wedding began Wednesday, Rodriguez’s mother and father, wearing T-shirts with “Team Javi” printed on the front, pushed the wheelchair Rodriguez was sitting in down the aisle. Cuevas walked in afterward, her arms linked with her stepfather’s. “You look so good!” she said. As the chaplain began speaking, he mouthed to her, “I love you.”
After putting their rings on, they looked at each other and repeated after the chaplain, “From this day forward, you shall not walk alone.”
“My heart will be your shelter, and my arms will be your home.”
At the end of the vows, Cuevas leaned down to kiss Rodriguez, and the room eru-pted into claps and cheers.“I’m happy that we were able to do this,” Cuevas said after the wedding. But, “I’m heartbr-oken. “There are moments where it feels like a dream and moments where it feels real, and this is when it feels real.”