‘New lease on life’ for 8-year-old

Eight-year-old Luke Stone of Rockford has grown nearly 3 inches since May. While such a growth spurt may be commonplace for many second-graders, this is the first inch Luke has gained in five years.

Luke was diagnosed with cystinosis, a rare metabolic disorder characterized by an abnormal accumulation of amino acid cystine in various organs of the body such as the kidney, eye and brain, when he was 3. Failure to thrive (failure to grow) is one of the main symptoms of the disease. Other symptoms include excessive thirst and urination, rickets, and episodes of dehydration. About 400 people in the United States suffer from the disease.

The disease had taken a significant toll on Luke’s body, rendering his kidneys unusable. He had been undergoing hemodialysis (removing blood from the kidney, purifying it, adding substances to it and returning it to a vein) for about a year and a half. But hemodialysis was not a cure, and it took about 12 hours each night to complete the process. The only chance for a cure to the failed kidneys was to replace one of them with a new kidney.

So on May 20 at Lucile Packard Children’s Hospital at Stanford University Medical Center in Palo Alto, Calif., Luke received a kidney from his father, Mike Stone, through a kidney transplant. Luke had one kidney removed to make room for his father’s kidney.

The surgery began at 8 a.m. with surgeons removing the new kidney from 39-year-old Mike Stone. Mike remained in surgery until a little after noon. Then Luke went under the knife.

Although the incision to remove Mike’s kidney was only about 3-4 inches, Luke’s incision was more significant, closer to 12 inches, covering his entire sternum. Luke remained in surgery until around 11 p.m.

“There’s a lot more work in him than just yanking it out of me,” Mike Stone said. “I was just praying that everything would go well for him. I wasn’t even thinking about myself. I was just hoping the kidney would go in and start working. It was amazing. He was producing urine minutes after they put it in, which is what they want to see.”

Mike Stone said Luke continues to do well nearly six months after the transplant. Not only has Luke grown, but he also has a restored appetite (pizza and tacos are still his favorite) and has more energy than he had before.

“Luke is so far a success,” Stone said. “It’s wonderful just to come home at night and see a kid with energy like a normal kid. He’s got a new lease on life.”

Luke returned to school as a second-grader at Marsh Elementary School this fall. “He was very excited about going back to school and, of course, everybody was very excited to see him come back,” Stone said. “Luke’s a fighter and he’s trying really hard to get caught up and stick it out.”

Luke’s classmates made him a collage before the surgery that remained on the wall in his hospital room throughout the summer.

Luke still suffers some symptoms of cystinosis. For example, sunlight is still extremely painful for him because of crystals that form in his eyes. But his creatinine (poisons in blood) level is low, and his three-month biopsy was negative. Doctors expect Luke to get about 20 years out of the kidney.

Mike Stone also continues to do well. Although he was back at work two months after the surgery, the healing process was a little longer than expected because of scar tissue that was in his body prior to the surgery. He said doctors told him his kidney would grow 15-20 percent after the transplant to make up for the loss of the one kidney.

Luke Stone was about the 60th person to undergo a steroid-free transplant in the United States. The steroid-free procedure was developed by nephrologist Minnie Sarwal, assistant professor of pediatrics at Stanford, and surgeon Oscar Salvatierra, professor of surgery and pediatrics at Stanford and director of the school’s pediatric kidney transplantation program.

The steroid-free procedure is designed so patients experience less weight gain and fewer acne problems as adolescents. Steroids are generally used in transplants as an anti-rejection method. Some transplant recipients remain on steroids the rest of their lives.

The steroid-free procedure required Luke to remain close to the hospital for the first 100 days after the transplant. That meant Luke, his mother Linda, and his siblings Alex, 8, and Makayla, 4, would need to stay in California while Mike returned to Rockford to work. He said he talked to his family on the phone at least twice a day.

“That was hard. Being apart from them was harder than going through the surgery,” Mike Stone said. “I just went to work and missed my family for six weeks. It was tough.

“But it was a beautiful summer for them,” Stone added. “And it was a wonderful chance for my wife to relax after 18 months of dialysis with my son. She had a chance to enjoy the beautiful area. I think my wife is a saint for everything she’s been through, and I love her dearly.”

Bills for the transplant are beginning to trickle in. The post-transplant bill alone was $137,000, and Stone said he expects the final costs to be at least $250,000.

A fund has been established to assist the Stones with the cost of the transplant. Contributions can be made in Luke Stone’s name at any AMCORE Bank location or by mail to Luke Stone, c/o AMCORE Bank, 501 7th St., Rockford, IL 61104.

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