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Love and Lightsabers: Care Beyond Medicine

Luke EdmundsThere are very few experiences more heart-wrenching for a parent than helplessly watching their child suffer. When things looked darkest for Luke Edmunds, Nicole Cloutier was ready to give her son anything he wanted to help ease his pain, even if it meant letting him go. But Luke’s selfless request and amazing recovery gave new hope to his family.

After a difficult recovery from strep throat led doctors to investigate further, Luke was referred to Baylor Scott & White McLane Children’s. There he was diagnosed with acute myeloblastic leukemia, a rare and aggressive form of bone marrow cancer which has a survival rate of just 26 percent. He immediately began chemo therapy, the first step in a 200-day journey that would challenge both Luke and his mother.

Although she “tried to keep it together for Luke,” Mrs. Cloutier says she was overwhelmed not only with shock and grief, but also with stress and the logistics of being a single mother with a child in the hospital 125 miles from their home in Kyle. How long would they be there? How would she continue to work and provide for Luke? Would she have to drop out of her college courses? How would they get clothes for the next day?

“It was a whole change of life,” Mrs. Cloutier says. “There are challenges that come with living in a hospital. But there are so many ways that McLane Children’s tries to make things easier.”

Luke Edmunds in animal-assisted physical therapy

Through it all, friends, family, and the McLane Children’s staff worked to help both mother and son maintain a sense of normalcy. From reminding her to eat and take a break to scheduling procedures around her work, the McLane Children’s staff was there for Mrs. Cloutier so that she could be there for Luke.

“We are so blessed that we ended up at McLane Children’s because the people here became family,” Mrs. Cloutier says. “They understood that as a mother I was important to his care. They took care of him, but they also took care of me as a parent so I could focus on him.”

The staff also recognized that eleven-year-old Luke needed “life outside cancer,” as his mother says. “They balance all the technical and physical care with taking care of the whole child, their soul and feelings and emotions,” she says. To encourage Luke to focus on other things, the child life team asked him to help walk a visiting therapy dog. His nurses decorated his room with characters from Star Wars, and even arranged for him to see Star Wars: The Force Awakens during a break in chemo therapy. Because of his weakened immune system, Luke couldn’t be in public and would not have been able to see the film, but McLane Children’s staff surprised him with a private showing at a local theater that nurses sterilized to hospital standards.

Luke Edmunds plays with Star Wars toys in the hospital“They made me feel like I wasn’t going through this,” Luke says. Toy lightsaber in hand, Luke smiled ear to ear in the midst of one of the toughest battles of his life.

Unfortunately, things took a turn for the worse. Luke was experiencing severe heart failure, which caused fluids to back up into his lungs. To reduce his fluid retention, Luke could only have a very limited amount of liquid, just two ounces of water in a 24-hour period. Then, on Valentine’s Day, doctors informed his mother that Luke probably wouldn’t survive.

“He was basically drowning, but he was just crying for a drink,” Mr. Cloutier says. “When they told us he wasn’t going to make it, we decided to just let him have what he wants, anything to make him more comfortable. But instead, he asked for me.”

Luke Edmunds with his mother and step-father

Luke had met Mr. Cloutier just before his diagnosis while Mr. and Mrs. Cloutier were still dating. “During his treatment, David and Luke developed a relationship,” says Mrs. Cloutier. “When I asked him what he wanted, I thought he would ask for water or crackers. But he said, ‘I want you and David to get married now.’”

“I think it says a lot about his character and relationship with his mom that he was thinking about her and felt she needed to have somebody if he wasn’t going to be there,” Mr. Cloutier says, “and I take that responsibility very seriously.”

The couple married in the hospital. Just six weeks later, Luke was released with his cancer in remission. At 13 years old, he continues to take medication for his heart condition and has frequent check-ups, but has returned to his normal life, now with a larger family to support him. He has big plans to be a computer game designer, cater on the side, and support hospitals that make an impact on other children’s lives. “We couldn’t have survived this without all the help we got from everybody,” Mrs. Cloutier says. “McLane Children’s is family and they saved my child’s life.”